Medical Cannabis under Prescription

Debate between Mary Glindon and Jim Cunningham

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.

NICE Appraisals: Rare Diseases Treatments

Debate between Mary Glindon and Jim Cunningham

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”?

Housing Bodies: Accountability

Debate between Mary Glindon and Jim Cunningham

Tuesday 20th November 2018 Westminster Hall

[Mr Cunningham]

That is why I mentioned the Philmont estate in the constituency of my hon. Friend the Member for Coventry North West. There, there has been bad workmanship—to say the least—and a bad build. Residents have been moved out of their houses for a period of about 40 weeks and cannot get any compensation. They have to rent privately to get accommodation; who is going to compensate them? My hon. Friend the Member for Feltham and Heston (Seema Malhotra) has highlighted similar problems to those we have in Coventry. The builders, Persimmon, have particularly let down residents by refusing to take any responsibility or pay compensation.

Of course, there are sometimes unforeseen issues with the quality of the design and building of a house. However, there seem to be widespread problems with new builds due to rushed building and substandard resources. I also hear from an increasing number of constituents about delays in moving into their new-build houses. I have one constituent who has had a seven-month delay in the building of her new home this year, which has made her and her children homeless: they are having to get by in a friend’s spare room. I am certain that that is the case across the country, as my hon. Friend touched on. I am also sure that there are many more people out there who are affected by delays, but who never contact us because they do not think they will get anywhere.

I would like the Government to review the checks that are currently in place regarding the design and build of houses. They should also look at the support offered to customers by housing organisations when issues arise. We must make sure that mistakes and errors are found early in the process, and that delays are lessened as much as possible.

[Mary Glindon (North Tyneside) (Lab)]

Can we please note that the things that are wrong with these houses are not simply minor issues? I spoke to a woman on Saturday whose staircase had twice collapsed. Another constituent had the roof of their new home collapse. These problems are really serious; they are not just little things that need to be put right after someone has moved in.

[Mr Cunningham]

I fully agree with my hon. Friend. Given local government cuts, trading standards officers cannot police this sector any more—it is as simple as that. That is one reason why these housing organisations are getting away with it, but the law should be tightened up as well.