Health Inequalities: Office for Health Improvement and Disparities

Mary Glindon Excerpts

Wednesday 26th January 2022 Westminster Hall

[Mary Glindon (North Tyneside) (Lab)]

It is an honour to serve under your chairmanship, Mr Twigg. I congratulate my hon. Friend the Member for Bootle (Peter Dowd) on an excellent, well-researched speech and on securing this important debate.

Before turning to the exact subject of the debate, as vice-chair of the all-party parliamentary group for vaping, I want to reflect on the role of the predecessor body of the Office for Health Improvement and Disparities. Public Health England sought to be a practical institution, with evidence and pragmatism at the heart of its approach to public life. I want to pay particular attention to its work on tobacco harm reduction, which I have witnessed not only as a member of the APPG but personally. Since 2015, across seven evidence reviews, PHE reports on the role that e-cigarettes can play in a healthier society have captured the ethos of the organisation in its entirety.

The first report was a landmark publication for the vaping industry. It concluded—I hope that everyone in this House heeds this fact when reflecting on reducing inequalities born from smoking cigarettes—that vaping is “95% less harmful” than tobacco. In its report, PHE went on to look favourably on e-cigarettes, while others have sought only to fuel misinformation, risking lives by claiming vaping and smoking to be one and the same. They are not. It is because of that evidence-based endorsement of vaping that millions of smokers across England and—dare I say it?—across the world, who have exhausted all other routes trying to quit smoking, have a fighting chance with an incredibly successful product that is helping smokers to quit.

Smoking is perhaps one of the biggest contributors to inequality in our society, causing considerable damage to private and public health, and it has a high impact on physical and mental health. It is an expensive and addictive habit, particularly for those most disadvantaged in our society, where smoking prevalence is highest. Vaping is less expensive and is an effective way to stop smoking. It is therefore critical that the Office for Health Improvement and Disparities recognises the role of vaping, picks up the torch left by Public Health England and continues to be a stalwart champion of tobacco harm reduction.

This could not be more important as we continue to wait for the Department of Health and Social Care to publish, first, its review of the Tobacco and Related Products Regulations 2016—that review is now eight months late—and secondly, its new tobacco control plan, which is also late and nowhere to be seen. The APPG for vaping’s door is always open to the Minister, and I know that leading bodies such as the UK Vaping Industry Association would welcome the chance to work with Government to secure a future in which the health benefits of switching from smoking to vaping are fully realised. The UKVIA has industry-led solutions to many of the remaining concerns that prevent people from finally making the switch to vaping. Those solutions include the guidance it produced on introducing restrictions on packaging and branding. I support that paper, and can share it with the Minister if she wishes.

The UK is seen by many across the world as a world leader in tobacco harm reduction, with countries, smokers and vapers looking to the UK for guidance in this space. That reputation should not be compromised by the loss of institutional knowledge during the transfer of resource from Public Health England to OHID, and it should not come at the cost of a Government Department delaying publications once again. If the Government are serious about levelling up and wish to support endeavours to improve people’s lives, they must ensure that OHID adopts the same evidence-based approach as its predecessor to finding solutions for life-debilitating problems.

I once again express my gratitude to my hon. Friend the Member for Bootle for having secured this debate. I hope that in responding, the Minister can provide clarity about the timeline for responding to the TRPR review and for the publication of the new tobacco control plan. I also hope that she agrees that the OHID must remain independent, with its institutional knowledge protected.

Medical Cannabis: Alleviation of Health Conditions

Mary Glindon Excerpts

Thursday 4th November 2021 Commons Chamber

[Mary Glindon (North Tyneside) (Lab)]

It is an honour to follow the hon. Member for Edinburgh West (Christine Jardine). I congratulate the hon. Member for Inverclyde (Ronnie Cowan) on securing this debate, which, as everyone has said, is yet another debate on the same issue. Three years on from when we had such hope, it is disappointing that we find ourselves still here.

I am going to speak yet again about one of my constituents, a very brave and formidable woman who is known to many in the House, because she has been courageously campaigning for the medical use of cannabis by highlighting the problems she has faced in recent years to access the drug Bedrocan. Lara Smith is a wife and the mother of three children. She was a paediatric nurse and a county fencing coach before her health deteriorated because of cervical and lumbar spondylosis. For over 20 years, she has had 35 different medications, as well as a number of operations for her condition. Unfortunately, she has been left with permanent nerve damage, limited mobility and a constant, annoying and debilitating tremor in her right hand. Her quality of life has been completely impaired. That is not just because of her medical condition, but because of the awful side effects of the drugs she has been prescribed over all those years. This has meant that Lara was not able to be the full-time mother that she wanted to be to her daughters and son.

Fortunately, Lara’s pain management consultant in the north-east prescribed Bedrocan, and the transformation was such that she was able to come off all the other medications. Her young family said that they felt they had their mam back. The downside was that for a time, Lara could access the drug only by travelling to a Dutch pharmacy to collect it on a private prescription. I have said it before, so I will not go into it again, but she made that arduous journey every three months, bearing in mind the pain she was in. She had to notify full details of her prescription and her travel to Border Force each time. The costs of the medication and travel were very expensive for her family, but they thought that the sacrifice was worthwhile, because of the difference the drug made to Lara.

A couple of years ago, I was successful in raising the issue at Prime Minister’s questions. I received a response from the appropriate Minister at the time, who said that

“there should be no barriers to patients getting access to the appropriately prescribed medicine. The Department of Health and Social Care…has been working closely with suppliers and NHS procurement pharmacists to ensure that prescribed CBPM are available when needed.”

If only that were the case.

Fortunately, Lara no longer has to travel to Holland for her drugs—they are prescribed on a private prescription—but her consultant has unfortunately been unsuccessful in obtaining an individual funding request for her, which is a great disappointment to us all. That is because unfortunately the Northumbria trust—it is a well-respected and well-known trust in many ways, and I always support our trust for a lot of the good things it does, but I am rather frustrated in this instance—followed guidelines that do not advocate the use of cannabinoids, citing a lack of evidence for effective pain relief, because of the difference in the trials put forward to prescribe the drugs, and we have already heard about that issue. On that score, there has been no progress. Perhaps the biggest irony of all is that the trust advocates and allows the prescription of synthetic cannabinoids. For Lara’s drug, a synthetic cannabinoid is £588 a month and unfortunately leaves her quite ill; she pays £100 less for her private prescription. Such a state of affairs seems ludicrous.

There is nothing much I can add to what has been said today. All the speeches are always passionate, and Members speak with such knowledge on the subject—knowledge that has had to be acquired over all the years there has been the fight to win the case. I know that the new Minister, having worked with her on all-party parliamentary groups, is compassionate and knowledgeable, so we put great hope in her that we will see some progress after today’s debate and the other debates that have gone before. I wish her the best of luck in taking this forward, and I am sure she knows we are all behind her. We hope there will be change for the adults and children whose quality of life needs to be improved and can easily be improved if some changes are made in law.

Smoking Cessation: Prescription of E-cigarettes

Mary Glindon Excerpts

Monday 1st November 2021 Commons Chamber

[Maggie Throup]

My hon. Friend is right that e-cigarettes are just a gateway to stopping smoking completely. That is the ultimate goal. We want to ensure that people go from smoking to e-cigarettes, and then to no smoking at all.

[Mary Glindon (North Tyneside) (Lab)]

COP9 is due to start next week and, as yet, the Government have not announced their delegation. Will the Minister therefore please tell us who the delegates might be and what their approach will be to COP9, given that the World Health Organisation is completely against vaping?

[Maggie Throup]

There will be officials at COP9. It is a very important meeting. The UK’s approach to e-cigarettes has been and always will be pragmatic and evidence-based. I am sure that will be the message they put forward at COP9.

Dame Carol Black’s Independent Review of Drugs Report

Mary Glindon Excerpts

Wednesday 27th October 2021 Westminster Hall

[Mary Glindon (North Tyneside) (Lab)]

It is an honour to serve under your chairmanship, Ms Fovargue. I congratulate my hon. Friend the Member for Liverpool, Walton (Dan Carden) on securing the debate, and on the way that he spoke with great knowledge and passion. I declare my interest as co-chair of the drugs, alcohol and justice cross-party parliamentary group. In that capacity it was my privilege to introduce Professor Dame Carol Black to address our group the week after she published her report. My co-chair, Lord Ramsbotham, has repeatedly asked in the other place when the Government will establish the long-awaited royal commission on the criminal justice system. I hope the Minister may have some news on that for us.

Dame Carol’s report recommended earlier interventions for offenders to divert them away from the criminal justice system, particularly prison. Providing people with pathways into treatment, rather than into the criminal justice system, seems an eminently sensible approach because, as Dame Carol observed:

“Rarely are prison sentences a restorative experience.”

Over a third of prison places in England and Wales are taken up because of drug-related offences.

I pay tribute to the pioneering work of the late Ron Hogg, who, as Durham’s police and crime commissioner, introduced a successful checkpoint scheme. We have since heard of other excellent diversion schemes, such as those developed in the West Midlands and in Thames Valley—we desperately need more like them. I am glad that Ron’s successor, Joy Allen, along with Dorset PCC Dave Sidwick, is leading the PCCs’ work on addiction. I am sure the Minister will join me in welcoming their dedication to helping people towards a safer and healthier future.

Dame Carol understands that addiction is a chronic health condition, arising as people try to cope with trauma and other issues. Her report rightly condemned the current situation as intolerable. Drug-related deaths are at record levels, the impact of drug-related harms in many places is getting worse and the worst affected areas are those with greatest deprivation. I am sad to say that the highest rate of drug misuse deaths in 2020 was once again in the north-east, which according to the ONS has had the highest rate of drug misuse for the past eight years, with a significantly higher rate than other regions of England and over three times the rate of London.

We know drug treatment has seen years of disinvestment. Some services have seen budgets nearly halved as funding has been redirected to other local government priorities. There has been an absence of political leadership and financial commitment to address the concerns of the sector, with very clear and obvious consequences. A range of treatment providers welcome Dame Carol’s review, fully endorse her recommendations for a whole system approach and told our group they were keen to seize this unique opportunity to rebuild and renew our treatment and recovery system. Jon Murray, an executive director at With You told us:

“This review represents a potentially defining moment in the course of drug treatment in the UK.”

Yasmin Batliwala, chair of the Westminster Drug Project said:

“This report has the potential to be a game changer!”

Karen Tyrell, executive director at Humankind added:

“Dame Carol Black has provided the map needed to get the sector back on course and we urge the government to employ their moral compass, invest accordingly and help us turn this ship around.”

For far too long, piecemeal investment through path- finders and pilot schemes failed to provide the stability for providers to develop the long-term plans, and recruit and retain the high-quality staff, that are needed to meet the ambitions laid out in the review. As recommended, ringfenced funding is essential for the sector to build and maintain a resilient support system for the hundreds of thousands of people who so desperately need and deserve those services. I sincerely hope that the Government will act on all of Dame Carol’s recommendations.

Tobacco Control Plan

Mary Glindon Excerpts

Thursday 10th June 2021 Westminster Hall

[Mary Glindon (North Tyneside) (Lab)]

It is an honour to serve under your chairmanship, Mrs Miller. I thank my hon. Friend the Member for City of Durham (Mary Kelly Foy) for having secured this important debate and speaking so eloquently, especially as the Department of Health and Social Care is looking to publish a new tobacco control plan later this year. The forthcoming plan is an enormous opportunity for the Government to cement the UK as a global leader in tobacco harm reduction. Having left the European Union, the Government must—alongside the post-implementation review of the tobacco and related products regulations—set a clear direction for reducing smoking prevalence and improving public health.

However, if the Government are to achieve their ambition for a smoke-free society by 2030, their forthcoming tobacco control plan must champion the less harmful alternatives to combustible tobacco. In particular, a significant and growing body of scientific evidence shows vaping to be the most effective alternative for adult smokers looking to quit smoking. In their blueprint for better regulation, the UK Vaping Industry Association made a series of recommendations to the Department of Health for consideration when reviewing the tobacco and related products regulations—a process that is already underway. These recommendations, many of which I support, can also be applied to the Government’s tobacco control plan.

The first recommendation involves effectively tackling the increasing levels of misinformation, as well as the increasing misperception of the relative harm of e-cigarettes versus combustible tobacco. Action on Smoking and Health data suggests that millions of smokers—more than half of the 6.9 million remaining in the UK—could now be dissuaded from exploring switching to e-cigarettes because of incorrect views or confusion about the harm of e-cigarettes. To combat increasing misinformation, the UKVIA recommends that the Department of Health launch an effective communication strategy. This should include the introduction of approved health claims and switching messages that can be displayed on vape device and e-liquid packaging alongside nicotine health warnings, a proposal similar to those explored by the Governments of Canada and New Zealand.

In addition, it is important that medical professionals at local stop smoking services are sufficiently supported, with clinicians signposted to the latest clinical guidance and evidence on e-cigarettes. An evidence-based approach to smoking cessation must be adopted consistently by local stop smoking services to support patients in their harm reduction journey. This is critical, considering the upcoming trials in NHS A&E departments. The forthcoming tobacco control plan should also make provisions for a review of the regulation of nicotine in e-cigarettes, to better understand the role nicotine plays in allowing e-cigarettes to be a satisfying alternative for adult smokers wishing to make the switch away from smoking. For them to compete with combustible cigarettes and provide a satisfactory alternative for those looking to switch, they must provide a comparably satisfying nicotine experience. It is the toxic by-products of combustion, not the nicotine, that are responsible for smoking-related death and disease.

Understanding the alternatives to combustible cigarettes and making a clear distinction between smoking and vaping is critical to our smoke-free ambitions and changing misconceptions. Our all-party parliamentary group for vaping made several recommendations in our report on vaping in workplaces and public places. These are endorsed by the UKVIA and, if implemented, would support adult smokers in their transition to less harmful alternatives and give those who have already made the switch the best chance of sticking at it. I can provide the Minister with a copy of that report, if she so wishes. My late husband Ray is an example of such a switcher: having smoked from the age of nine with a couple of interludes, he made the switch to vaping several years ago, and was never separated from what he called his “pipe”. I might add that he did not die of a smoking-related illness.

Finally, I turn to another opportunity to enact the meaningful regulatory change to support smoking cessation. The Government are currently considering the submissions made to the consultation on the review of the Tobacco and Related Products Regulations 2016. Like many others, I eagerly await the publication of the Department’s response, which has already been delayed from May 2021 until later this year. It is hoped that the Department of Health and Social Care will continue to take an evidence-based approach to the regulations and listen to the experts. The TRPR review can help shape the UK’s approach to tobacco harm reduction considerably and can significantly support the next tobacco control plan. I look forward to the Government’s response to the tobacco and related products regulations review and the publication of the tobacco control plan. I hope that they make the most of these unique opportunities to support adult smokers in their transition to a less harmful alternative.

UK Rare Diseases Framework

Mary Glindon Excerpts

Wednesday 24th March 2021 Westminster Hall

[Mary Glindon (North Tyneside) (Lab) [V]]

It is a great honour to serve under your chairmanship, Mrs Miller. I congratulate my hon. Friend the Member for Blaydon (Liz Twist) on securing the debate and on her excellent opening speech. The rare diseases framework is welcome, but in order to deliver on the vision it is important to reflect on the experiences of those with rare diseases over the past year.

I chair the all-party parliamentary group on muscular dystrophy, and last month our meeting brought together people living with muscle-wasting conditions, leading health professionals and charities representing relatives to discuss the impact of covid-19. It came after a month-long survey conducted by Muscular Dystrophy UK to assess the impact of covid-19 on people living with muscle-wasting conditions and their families and the effect on accessing healthcare services. There were over 400 survey responses and they were very concerning. The comments made at our APPG meeting backed up many of the survey’s findings.

We heard that the delivery of standard care had been put on hold and essential services were interrupted, and that it was proving very difficult to regain muscle strength after losing six months to a year of physiotherapy. Some had experienced diagnostic tests being put on hold as resources were diverted because of the pandemic and a number of clinical trials were also halted. Worryingly, the physical and mental impact of shielding has left many people reluctant to go out even to hospitals when restrictions are relaxed.

Our APPG also considered what might happen when restrictions are relaxed and we return to some kind of normal life. Infrastructure challenges for service provision still remain, and there is concern about if and when staff and resources redirected to covid-19 will return to neuromuscular services. Virtual clinics have had a positive impact and there are benefits to be taken forward of continuing these for some people, especially taking into account issues such as long travel times. However, not everything can be assessed or picked up virtually. Routine face-to-face appointments are still critical.

Members of the APPG are always grateful for the support of our secretariat Muscular Dystrophy UK, medical professionals and those with muscle-wasting conditions. On their behalf, I ask the Minister to outline how the action plans for the framework will learn from patient and health professional experiences during the pandemic, and will also shape the priorities for accessing essential specialist care and mental health support.

Covid-19 Update

Mary Glindon Excerpts

Thursday 26th November 2020 Commons Chamber

[Matt Hancock]

We look as much as we can at taking the impacts into account. For instance, the mental health of people under lockdown is of course more challenged than in normal circumstances. We balance that against the impact of covid both directly and in filling up the hospitals on the healthcare that we all get for all the other conditions that exist. It is a difficult balance to strike. On the particular impact on mental health, which my hon. Friend raised, the Royal College of Psychiatrists has done very interesting work to understand the nuanced balance between the impact of covid on people’s mental health and the impact of lockdown. Both are significant and I commend its work to him.

[Mary Glindon (North Tyneside) (Lab) [V]]

It is devastating that after all its efforts, the north-east will be in tier 3. Across the whole country, obesity remains a serious factor in covid-19. Yesterday, the all-party group on obesity launched its report to build on the Government’s obesity strategy. Will the Minister meet officers of the group to discuss the report’s recommendations and work with us to ensure a focus on the prevention and treatment of obesity in the fight against covid-19?

[Matt Hancock]

Yes. the hon. Member and I share an enthusiasm for this agenda with the Prime Minister, who is a personal convert to the need to tackle obesity. In fact, this crisis shows how important it is, because people who are obese are more likely to have a more serious impact from covid, if they catch it.

Oral Answers to Questions

Mary Glindon Excerpts

Tuesday 23rd June 2020 Commons Chamber

[Andrew Gwynne (Denton and Reddish) (Lab)]

What steps he is taking to tackle regional variations in the restoration of cancer services after the covid-19 outbreak.

[Mary Glindon (North Tyneside) (Lab)]

What steps his Department is taking to enable the resumption of cancer treatments delayed as a result of the covid-19 outbreak.

[The Parliamentary Under-Secretary of State for Health and Social Care (Jo Churchill)]

Essential and urgent cancer treatment has continued throughout the pandemic and cancer specialists, as always, are discussing the best treatment options with their patients. We are working to ensure that referrals, diagnostics and cancer treatment are back at pre-pandemic levels across the whole of England as soon as possible. Due to covid-19, the 21 cancer alliances in England have established hubs to ensure dedicated cancer care away from hospitals dealing with the virus. From the end of April, local systems and cancer alliances have continued to identify ring-fenced diagnostic and surgical capacity for cancer in line with issued guidance. Regional cancer senior responsible officers must now provide assurance that these arrangements are in place to help minimal regional variation.

--- Later in debate ---

[Jo Churchill]

I regularly engage with cancer charities and would be delighted to look at them to see where we are making good headway and where, perhaps, we could have discussions about other things that need to be targeted. While I have the hon. Gentleman on the screen, I would also like to highlight the fact that the Greater Manchester cancer alliance has led the way in its response to this pandemic. It was one of the first to establish a surgical hub model to ensure that cancer surgery was able to continue and that the local cancer system as a whole responded well. The alliance has also been looking to accelerate the rapid diagnostic centre to help promote diagnostics, so I thank everyone for that.

[Mary Glindon [V]]

As the Minister knows, being diagnosed with cancer is devastating, and one of the most important things to get patients through this difficult time is for them to be able to focus on their treatment. What message does the Minister have to comfort those people who are worried and stressed because they still cannot access the treatment they need because of covid-19?

[Jo Churchill]

I would say that, as soon as people notice any signs that might worry them, they should seek help. We have worked at pace to ensure that services have been resumed and are able to deliver for patients. Ensuring both early diagnosis and that patients can access the treatment that they need swiftly is our key ambition. We know that, following the guidance that has been delivered, we are achieving that throughout the system. Covid-19 has upended all our lives, and some decisions have been made to ensure the safety of patients, but we are now firmly back on track and will ensure that patients get the care they need.

The National Health Service

Mary Glindon Excerpts

Wednesday 23rd October 2019 Commons Chamber

[Mary Glindon (North Tyneside) (Lab)]

It is an honour to follow the hon. Member for Dudley South (Mike Wood). I think the whole House wishes him all the best of health in the future, having recovered from that terrible illness.

I congratulate all the staff at Northumbria Healthcare NHS Foundation Trust because, for the second time in a row, they have received a rating of outstanding from the CQC. I have to declare an interest, as members of my family work for the trust, but it was great news to know that the organisation is providing outstanding services to my constituents, despite all the cuts that have been imposed over the years.

I must turn from a message of congratulations to the trust to complaining to the Government about an issue that people have already highlighted: the problem being faced by all those who desperately need access to medical cannabis, including my constituent, Lara Smith, who is known to people in here for courageously highlighting the problems she has faced in recent years in accessing the medicine Bedrocan.

Lara was a paediatric nurse and a county fencing coach before her health deteriorated because of cervical and lumber spondylosis. She has been on 35 different medications and had several operations for her condition. Unfortunately, she has been left with permanent nerve damage, limited mobility and a constant tremor in her right hand. Her quality of life has been impaired, not just because of her medical condition, but, particularly, because of the drugs she was prescribed for it.

Lara’s pain management consultant prescribed her Bedrocan and the transformation was such that she was able to come off all her other medications, but the downside is that she can access the drug only by travelling to a Dutch pharmacy to collect it. That is an expensive, arduous journey by ferry, which she makes every three months and has done so for four years. She always notifies the UK Border Agency of all the details it needs to know of her prescription and travel details, but, sadly, and most embarrassingly for her, on her last trip she was pulled aside by the agency, which wanted to check her medication. Of course, she was mortified and she worries it might happen again.

Lara’s message to the Minister is that she is more than fed up with having to travel 300 miles to a Dutch pharmacy to get her medication. Can the Minister give her any reassurance that things will change soon, as he promised when he met patients’ families from the End Our Pain campaign in March this year? Access to medical cannabis was legalised last November, so why has nothing happened to help patients since then?

I also wish to thank Dr Azzabi and the all the staff at the northern cancer care centre who have looked after my husband Ray since he was diagnosed with incurable prostate cancer four years ago. I give special thanks to the staff on ward 36, who are now seeing him through his chemotherapy. Ray was very lucky because when he was diagnosed he received instant treatment, which was a massive blessing for us. However, other cancer patients are not so lucky, and once they are diagnosed—a terrible blow to the family—as we know from the targets, treatment is now taking longer and longer. It is hard enough to be diagnosed with cancer, but knowing you have to wait for your treatment is unbearable.

Our staff in the health service are under pressure and services are lacking. Our precious health service deserves more. I hope that the Government will heed all the messages today and have taken note.

Spinal Muscular Atrophy

Mary Glindon Excerpts

Thursday 25th July 2019 Commons Chamber

[Sir John Hayes]

Yes. The condition, as the hon. Lady suggests, is often degenerative. In cases such as the one she describes, which, as I mentioned, is not the first time she has raised it, a young person who would normally develop as we all did could be left with arrested development or, even worse, declining capabilities. Indeed, that has happened to my constituent too.

The hon. Lady will know that, following strong advocacy by families of SMA patients, Muscular Dystrophy UK, TreatSMA, Spinal Muscular Atrophy UK and many clinicians, NICE and NHS England made amendments to the managed access agreement. While amendments are far from unwelcome, the disappointing truth is that the new criteria will still exclude some SMA patients desperate for treatment in the way she and others have articulated.

The intensely difficult battle fought by SMA patients has highlighted deeper flaws in the system. Families report feeling that they have been pitted one against another as advocacy groups are forced to decide whether to push for wider accessibility, and as a consequence risk delaying treatment for those eligible, or, alternatively, to take what is on offer and exclude a minority of the SMA family.

Life can be intensely difficult. All our bodies are complicated and vulnerable, intricate and fragile. We are regularly reminded, are we not, that they can go wrong in a multitude of hard-to-understand ways. I have argued many times in this House that a society should be gauged by how it cares for, protects and promotes the interests of its most vulnerable members.

[Mary Glindon (North Tyneside) (Lab)]

I congratulate the right hon. Gentleman on securing this important debate. I, too, have a young constituent, Sam McKie, who has SMA type 2. I hope the right hon. Gentleman agrees that the issue is that, whatever has happened so far, we need to know that NICE will look at the fact that the drug can halt further deterioration. As he says, we are all weak mortals, but if that deterioration is halted, people can have some quality of life, whatever type of SMA they have.

[Sir John Hayes]

Exactly. That is why, in the exciting conclusion to this speech, I shall make demanding suggestions. I think they are demanding because of the demands of those who need this drug, not because of any particular interest I might have in this matter beyond a passion to ensure that my constituent and others like her get what they need so desperately.

--- Later in debate ---

[Seema Kennedy]

I know that there is an issue with some people suffering from SMA type 3, but I am not the person who would make the decision on whether Spinraza was effective or not; that is why NICE is there.

Children with the most severe form of SMA type 1 are already benefiting from treatment with Spinraza. Following yesterday’s announcement, eligible patients with types 2 and 3 will begin treatment as soon as possible within the next three months.

NICE has concluded that there is not sufficient evidence at this stage for the managed access agreement to cover some patients with SMA type 3 or any patients with type 4; that is why we are still carrying on collecting evidence. I realise how dreadfully painful that is for those not able to access Spinraza. The majority of patients will be eligible under the managed access agreement.

The parties to the agreement have agreed to keep the eligibility criteria for treatment under review during the five-year term of the agreement, so those criteria may be further extended in future if more evidence of benefit emerges over time. NHS England and I have acknowledged that the inclusion criteria associated with the managed access agreement could have been more clearly communicated when it was announced.

I turn to the NICE process altogether. This is an important system. It makes independent, authoritative, evidence-based decisions, which is essential so that taxpayers can be assured that the price we pay for new medicines reflects the value that they bring. It also helps ensure rapid access to effective new treatments for NHS patients. It has been going for 20 years and is internationally respected. There are both established and new pharmaceutical companies developing medicines for rare diseases, which takes an awfully long time, based here in the UK, and medicines can be brought to the market through the NHS very quickly. The Department is keen to press on with that.

We have a UK rare diseases strategy, which was set out in the NHS long-term plan. Genomics is a particularly important area, in which we want to innovate so that we have more comprehensive and precise diagnoses and allow patients to access the right drugs. We are committed to that. The NICE process has recommended more than 80% of the medicines appraised and 75% of medicines for rare diseases for some or all of the eligible patient population, but of course the processes must evolve. They have to keep going, taking into consideration developments in science, healthcare and the life sciences sector. That is why NICE keeps its methods and processes updated through periodic review, which includes extensive engagement with stakeholders, including patient representatives, drug manufacturers and clinicians.

[Mary Glindon]

Has the Department given any consideration to the MAP BioPharma report released earlier this year, which looked at how the appraisal process could make a fairer playing field for rare diseases?

[Seema Kennedy]

Yes, the Department has looked at that report. NICE recently initiated a review, and I assure Members—as I did when I answered the urgent question on Tuesday—that it will be wide-ranging and carried out with extensive engagement with stakeholders. I shall be keeping a close eye on it if I remain in this job—and even if I do not.

This has been an important debate. I thank my right hon. Friend the Member for South Holland and The Deepings, who always speaks so passionately on behalf of people who are sick and on behalf of the most vulnerable—those children who have no voice for themselves. I reassure Members that access to effective new treatments will always be a priority for the Government.

I thank you, Madam Deputy Speaker, for your service to us in the Chair, and wish all right hon. and hon. Members and all who work here in the Palace of Westminster a very revivifying recess.

Question put and agreed to.