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.

Body Image and Mental Health

Mary Glindon Excerpts

Tuesday 23rd July 2019 Commons Chamber

[Jackie Doyle-Price]

The hon. Gentleman raises an issue close to my heart. When we talk about so-called reality TV programmes, it is as if the people participating in them are normal people. The reality, however, is that they are not normal people. They are semi-professional celebrities who have often undergone enhancements to become attractive to be chosen to go on these television programmes. The whole thing starts to develop insidiously in a culture, making people think that they should aspire to look like that and that it is normal. Everyone is chasing a lifestyle that is frankly not attainable.

We have all enjoyed watching such programmes. I often say that we have become a nation of voyeurs, but perhaps we all need to remind society that there is no quick route to fame, fortune and success—that comes as a result of hard work—and that spending a bit of money on a nip and tuck and a lip filler will not be the route to earning a lot of money. We all need to start to address that, because we have allowed magazines and our media to develop this image. We have been complicit in it happening, because we have enjoyed that entertainment, but we are reaching a position where our society is extremely unhealthy.

The problem has been made particularly acute by the growth of social and digital media, which have increased exposure to unrealistic and unattainable images of beauty. As we all know, when we are browsing on our iPad we can look at one thing and straight away be bombarded with sites that squirrel us down a route where we are exposed to more and more such content. People who are looking at unrealistic body images will see ever more images that they aspire to. There is another insidious thing: a friend of mine was speaking to me only last night and said that she was looking at cosmetic procedures when, all of a sudden, an advert popped on to her screen encouraging her to spend a few thousand pounds so that she could learn to administer lip fillers herself. She thought how horrendous it is that our social media does that.

[Mary Glindon (North Tyneside) (Lab)]

Is the Minister aware of the Be Real campaign’s latest report, “The Curate Escape”, which looks at young people and their images on social media? Two thirds of young people edit pictures of themselves before they put them on social media, and the report makes a lot of really good recommendations. The Be Real campaign has been fantastic in recent years, focusing on health and wellbeing, rather than weight and people watching their weight. If she is not aware of the report, would she like a copy?

[Jackie Doyle-Price]

I thank the hon. Lady for raising that point—I have heard of that campaign. It is disturbing that so many people alter their images. None of us is perfect—God help us if we all were—but for people to think that they need to alter their appearance because they are unhappy with it, and for that to become normalised, is quite a sinister development in society. At the risk of being trite, perhaps we should be telling everyone to learn to love themselves.

Drug Treatment Services

Mary Glindon Excerpts

Tuesday 16th July 2019 Westminster Hall

[Mary Glindon (North Tyneside) (Lab)]

It is an honour to serve under your chairmanship, Mr Hollobone. I congratulate my hon. Friend the Member for Manchester, Withington (Jeff Smith) on an excellent speech and on his commitment to tackle unswervingly the problems associated with drug and alcohol abuse.

I am pleased to speak as co-chair of the drugs, alcohol and justice cross-party parliamentary group that last week considered the Advisory Council on the Misuse of Drugs’ recent report, “Custody-Community Transitions”. The report is helpful in providing advice on how to reduce drug-related harms that happen when people move between custody and the community. I hope the Minister will agree to implement the report’s practical recommendations as soon as possible to ensure continuity of care.

Some simple changes could make a huge difference. For example, it suggests prisoners with complex needs should not be released on to the streets on Fridays. Given that last year only 12% of prisoners with drugs problems left prison with naloxone, which can reverse the effects of overdose, the report recommends that naloxone should be issued to all prisoners with drug problems on leaving custody.

We have record rates of drug-related deaths, yet drug treatment budgets have been slashed and services cut, as has already been said. I am sad to say that my region, the north-east, is the worst affected in England. Today we have heard that drug-related deaths in Scotland have gone up by a staggering 27%. We can only tackle these soaring statistics if substance misuse services are made mandatory and drug treatment budgets ring-fenced.

Instead of investing in harm reduction, we waste valuable resources on an unwinnable war on drugs, treating this as a criminal justice rather than a public health issue. We have excellent examples of a different approach being taken in the checkpoint scheme in County Durham and the Thames Valley diversion scheme. They show effective alternative solutions—not easy options, but positive ways of getting people out of trouble and into treatment. Another innovation to help drug users would be the introduction of drug-consumption rooms—effectively overdose prevention centres—which the Government stubbornly refuse to allow, despite conclusive evidence that they are of massive benefit.

In summary, I will quote Paul Townsley, chief executive of the charity Humankind:

“These challenging times provide an important opportunity to cement the evidence base of what our service users and our communities need, but to achieve this we will need stable funding and commissioning… Government has a duty to act now to ensure treatment services are accessible to all who need them. We call on Government to ensure that substance misuse treatment is a prescribed local public health activity.”

I can only concur.

Medical Cannabis under Prescription

Mary Glindon Excerpts

Monday 20th May 2019 Commons Chamber

[Mary Glindon (North Tyneside) (Lab)]

It is an honour to follow the hon. Member for Reigate (Crispin Blunt), who is so impassioned—that was evident in his speech—and has done so much work on this issue. I think everyone would pay tribute to what he has done.

I congratulate the right hon. Member for Hemel Hempstead (Sir Mike Penning) and my hon. Friend the Member for Gower (Tonia Antoniazzi) on securing the debate and on the work they have done, alongside the End Our Pain campaign, to highlight the importance and urgency of this issue. It is heartbreaking to hear the stories of families who are trying to access medical cannabis, and especially parents whose children are so poorly. I am sure we all pay tribute to them for their persistence in standing up for their children.

[Mr Jim Cunningham (Coventry South) (Lab)]

I pay tribute to the right hon. Member for Hemel Hempstead (Sir Mike Penning). For a long time, he has been campaigning very strongly on this issue—in fact, we met some families he brought down to the House of Commons last year—as, of course, has the hon. Member for Reigate (Crispin Blunt).

If my hon. Friend the Member for North Tyneside (Mary Glindon) watched the news over the weekend, she will have seen a family who had to go to Holland and pay over £1,000 to get the medical relief that their kids need through medical cannabis. The question therefore is: why can we not do the same in this country? Why are we being so slow? A lot of kids are suffering, and some could go into a fit and die if we are not very careful. Does she not agree that the Government have to treat this with urgency?

[Mary Glindon]

I certainly would agree, and that is the case that we are all trying to make today.

I want to highlight the situation for my adult constituent, Lara Smith, who is known for courageously campaigning for the medical use of cannabis by highlighting the problems that she has faced in recent years to access the medicine Bedrocan. Lara 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 lumber spondylosis. 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, not just because of her medical condition but particularly because of the drugs that she has been prescribed over the 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 her the drug Bedrocan, and the transformation was such that she was able to come off all her other medications. Her young family said that they felt they had their mam back. The downside is that Lara can access the drug only by travelling to a Dutch pharmacy to collect it. Her arduous journey was shown just last week on “The One Show”—I hope that if people have not seen it, they may be able to on catch-up. She makes the journey every three months and has to notify full details of her prescription and travel to the Border Force. The costs of the medication and travel are expensive for her family, but it is a sacrifice that they have been making for over four years. The changes to the law that were made last November have not gone any way to making it easier for Lara to get her medication.

I raised this issue in Prime Minister’s questions, and afterwards I received a letter from the Minister for Policing and the Fire Service, 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.”

But that has not been the case for Lara and many other people, as we have heard tonight.

Lara’s private prescription cannot be dispensed by NHS pharmacists. Her consultant has been unsuccessful in obtaining an individual funding request, which Lara is very disappointed about. That was because the hospital trust follows the Royal College of Anaesthetists guidelines, which do not advocate the use of cannabinoids, citing a lack of evidence for effective pain relief, so all the while there has been no progress yet for Lara. Lara did approach an independent pharmacy to see whether it could get access to the drugs and bring them here to dispense them, but the licence fee would cost thousands and the cost would be borne by Lara. It is just beyond her reach.

The current state of affairs remains frustrating for Lara and all the adults and children who need these drugs. I do not know how many more trips Lara can make to Holland—not just on a financial basis, but because of her health—and I am worried about her. The process that the Government have put in place is too protracted. All I can say is that I hope the Minister will heed the words of the motion and particularly the very sensible proposals from the all-party group. This is a case of urgent need. We cannot delay any longer. Please listen, Minister, and please give some positive feedback this evening.

Health

Mary Glindon Excerpts

Tuesday 14th May 2019 Commons Chamber

[Jonathan Ashworth]

Absolutely. Everybody accepts that advances in life expectancy cannot continue indefinitely, but we need urgent investigation into what is happening here in the United Kingdom. As Michael Marmot, the authority on these matters, says:

“Since 2010, this rate of increase has halved. Indeed, the increase has more or less ground to a halt.”

He goes on to say:

The first thing to say is that we have not reached peak life expectancy. A levelling off is not inevitable. In the Nordic countries, in Japan, in Hong Kong, life expectancy is greater than ours and continues to increase.”

We need to understand what is happening in the United Kingdom. Surely it can be no coincidence that this halt in life expectancy advances has come after nine years of desperate austerity in our society.

Many of us are puzzled by the fact that, although we know that growing up in poverty means that people get sick quicker and die sooner, and we all accept that it is shameful—the Prime Minister accepts that it is shameful and talked on the steps of Downing Street about wanting to tackle these burning injustices—the Government continue to cut public health services by £700 million, including cuts of £85 million in the current financial year.

The stark reality is that these inequalities are costing the NHS £4.8 billion a year, and we are seeing a growing burden of chronic ill health in society. The NHS long-term plan, with its many laudable goals and ambitions, is simply undeliverable without investment in local public health services and a reversal of these deep, swingeing cuts.

[Mary Glindon (North Tyneside) (Lab)]

Does my hon. Friend agree that it is disgraceful that while we are talking about all those cuts to the health service the Government have provided more than £4 billion in tax giveaways to alcohol companies, which is the equivalent of the salaries of 160,000 nurses?

[Jonathan Ashworth]

As my hon. Friend indicates, government is about choices. The Government have chosen to give big tax cuts to some of the richest and most privileged people in society while cutting the public health services on which the most vulnerable rely. That tells us all we need to know about the Tory approach to the national health service.

Acquired Brain Injury

Mary Glindon Excerpts

Thursday 9th May 2019 Commons Chamber

[Chris Bryant]

My hon. Friend is absolutely right. I know that many Members in the Chamber today and others, including Ministers who are unable to participate in the debate due to their ministerial responsibilities, have also visited Headway groups in their constituencies. I have been to the group in Cardiff, which does a magnificent job. This is also about those who work in the NHS and alongside many of the voluntary organisations that do magnificent work. For many people, the work is thoroughly rewarding, because somebody can be taken from complete dependency on others to needing much less frequent support through neuro-rehabilitation, enabling them to stand on their own two feet and have the quality of life that they had before.

[Mary Glindon (North Tyneside) (Lab)]

Will my hon. Friend commend the vocational rehabilitation provided to 10 of my constituents by Momentum Skills in Newcastle? The organisation asked me to pass on its massive support for the “Time for Change” report and its recommendations.

Access to Medical Cannabis

Mary Glindon Excerpts

Monday 8th April 2019 Commons Chamber

[Matt Hancock]

Those guidelines are not a matter for the Home Secretary; they are guidelines in the health space, although the association that writes them does not report directly to me but is independent. Those guidelines do not prevent a physician who is on the specialist register of the General Medical Council from prescribing. If anybody has been told that they do, they do not; it is up to the individual professional judgment of a specialist clinician on the register to prescribe or not.

[Mary Glindon (North Tyneside) (Lab)]

Lara Smith, my constituent, is really upset about what happened to Teagan and her family at the weekend. Lara travels to Holland every three months to get a schedule 2 drug, Bedrocan, for her seriously debilitating illness. It could be imported but, if it was, unfortunately, she would have to bear the licence fee. Will the Minister say whether anything can be done for her?

[Matt Hancock]

Yes. My heart goes out to the hon. Lady’s constituent and her family. One of the purposes of the evidence gathering that we are doing, and of the calls of the national institute for trials, is to provide the evidence on which the NHS could routinely provide those medicines. At the moment, we have the ability for specialists to prescribe in the interim, but I want to get the evidence base in place for the longer term.

Oral Answers to Questions

Mary Glindon Excerpts

Tuesday 26th March 2019 Commons Chamber

[Matt Hancock]

As the right hon. Gentleman knows, I supported and indeed participated in the decision to ensure that access was made legal in the autumn, and I am working right now on trying to make sure that some of the challenges in the system are unblocked. Ultimately, these things have to be clinician led, but my sympathy is with those who are campaigning, whom I have met, because I know of the anguish that this problem is causing.

[Mary Glindon (North Tyneside) (Lab)]

5. What assessment he has made of the effect of prescription charges on the health and wellbeing of people with asthma.

[The Minister for Care (Caroline Dinenage)]

Extensive arrangements are already in place to help people afford NHS prescriptions. Those include a broad range of prescription charge exemptions, for which somebody with asthma may apply.

[Mary Glindon]

More than 90% of people on low incomes say they struggle to afford their prescriptions, and 71% told Asthma UK they skipped their asthma medication due to cost. Given the health inequalities in this country, will the Minister investigate that injustice?

[Caroline Dinenage]

People on low incomes who do not qualify for an exemption may be eligible for either full or partial help with prescription charges through the NHS low-income scheme. In addition, for those who do not qualify for that, the prescription pre-payment certificate is available, under which everybody can get all the prescriptions they need for only £2 a week.

NICE Appraisals: Rare Diseases Treatments

Mary Glindon Excerpts

Thursday 21st March 2019 Commons Chamber

[Mary Glindon (North Tyneside) (Lab)]

It is an honour to follow the hon. Member for Reigate (Crispin Blunt).

I thank the Backbench Business Committee for agreeing to the debate. I also congratulate my hon. Friend the Member for Blaydon (Liz Twist), who is, as she said, my fellow member of the all-party parliamentary group for muscular dystrophy. She made a lucid and compelling case for the review of the NICE appraisal process.

I have had the honour of chairing the APPG for several years. It works closely with our secretariat, Muscular Dystrophy UK, and with patients and carers, on a number of issues that affect the lives of those with muscular dystrophy and other neuromuscular conditions. Perhaps one of the most important issues that we consider is the ability of patients to access treatments for their conditions.

For more than a year, access to the drug Spinraza, manufactured by the company Biogen, has been the focus of the APPG’s concerns about, and frustrations with, the NICE appraisal process. Spinraza is the first and only treatment for patients with spinal muscular atrophy, a rare inherited neuromuscular condition that leads to the gradual loss of the ability to walk, move, breathe and swallow. It currently affects about 2,000 adults and children in the UK. There are several types of SMA, with type 1 being the most severe, usually resulting in the death of infants before they reach their second birthday. However, clinical trials of Spinraza have had amazing results for many of the patients who have tried it. It has been so positive for children with type 1 that over two years ago Biogen opened its global expanded access programme to provide the drug free to type 1 patients.

Spinraza is currently available across 24 European countries and in the US, but for patients in this country access to the drug is being held up by lengthy delays to the NICE appraisal process.

[Mr Jim Cunningham (Coventry South) (Lab)]

Does my hon. Friend agree that the hon. Member for Reigate (Crispin Blunt) is right that there needs to be a new model, and more importantly that something must be done about the cost of drugs? We cannot carry on with the escalation of the cost of these drugs because, as the hon. Gentleman said, that affects many families in different ways.

[Mary Glindon]

That is true, and I think it will be highlighted again and again in this debate.

The delay for patients in this country is made all the more frustrating because the Scottish Medicines Consortium approved Spinraza for children with SMA type 1 last May, and it now has a new ultra-orphan pathway and has speedily reassessed Spinraza, and as a result children and adults with SMA types 2 and 3 will be able to access the drug from next month.

In England the Spinraza appraisal has already been going on for 14 months. In January last year NICE announced that the pathway for the drug would, sadly, be the single technology appraisal, used for common diseases, rather than the highly specialised technology appraisal, which has been spoken about and is used for rare conditions. On 14 August, all hopes were shattered when NICE announced that it did not recommend funding by the NHS as the clinical effectiveness of the drug was not proven and the price was too high.

NICE launched a consultation and held a committee meeting in October to review all responses. There was still no progress for patients. Then, following a previous announcement, on 1 November Biogen closed the expanded access programme for type 1 to all new infants, so although 80 children remain on the programme, any child born after that date with type 1 has no access to this life-saving drug. The process drags on, and NICE had its third committee meeting earlier this month, but as yet no information has been published.

Biogen maintains that the STA process is not appropriate for rare disease medicines, because the smaller patient populations in rare diseases make it inappropriate to expect treatments to achieve the same cost-effectiveness thresholds as medicines in disease areas with much larger patient populations. It has also pointed out that it is very difficult to measure the quality of life in a young paediatric population. However, that is a major determining factor in the STA process, so it is a stumbling block in approving Spinraza. The company still hopes that a managed access agreement can be reached with NICE and NHS England.

The truth is that NICE’s emphasis on cost-effectiveness stands in contrast to the focus on more flexibility and data gathering for future review, which has allowed Spinraza to be approved in Scotland and across Europe. A recent report by MAP BioPharma, “Access to orphan medicines”, highlighted that 75% of rare disease medicines recommended by NICE through an STA between 2013 and 2017 were due largely to rare cancer drugs that are covered by the cancer drugs fund, and none of the only six non-cancer orphan drugs reviewed by NICE through an STA has received a recommendation in line with full marketing authorisation.

The report makes five recommendations for the NICE STA methods review: making changes to the evidence requirements for orphan medicines; drawing from the HST methodology to consider introducing a sliding incremental cost-effectiveness ratio up to £100,000; considering adapting the evidence review group for orphan medicines; embedding formal opportunities for negotiation between companies and NHS England; and considering interim recommendations in line with the cancer drugs fund and the new Scottish ultra-orphan pathway. MAP BioPharma points out that those adaptations would help to level the playing field so that patients, clinicians and companies could be sure that all treatments for rare diseases would be considered under a fair appraisal and that access would not be held back as a result of treatments being referred for an inappropriate appraisal. I hope that those recommendations will be given due consideration by NICE, NHS England and the Department.

Meanwhile, for those awaiting a decision on Spinraza, the anxiety continues. They include families such as that of my seven-year-old constituent, Sam McKie, who has type 2 SMA. Sam loves playing wheelchair football and has played since he was three. He now plays for the Newcastle Magpies wheelchair championship team and is as good as many of the adult players. In fact, he is so good that, in November, the Newcastle United Foundation named him as its disability player of the year. Sam’s dad, Gary, wrote to me, and his words reflect the views of everyone affected by SMA. He said that

“children are facing an agonising and uncertain wait for approval whilst their condition deteriorates. Gaining early access to this drug could see Sam get stronger and gain new abilities. The SMA community would love to be able to access this drug to give our babies and children a chance, a chance they surely deserve. This drug is available now, and timely procedures are stopping our children from accessing it, this is wrong. Please help us.”

Will the Minister hear Gary’s words? Will he take action to ensure that delays do not happen in future? And will he work with Muscular Dystrophy UK and other charities towards making NICE take on board MAP’s recommendations, to help to create a new and fairer system, like that in Scotland, that will deliver for patients like Sam and, as Gary McKie says, give them the “chance they surely deserve”?