Drugs: Ultra-rare Diseases

Debate between Rehman Chishti and Greg Mulholland

Tuesday 16th June 2015 Westminster Hall

[Greg Mulholland]

The recommendation from NICE is strange—I will come on to that—given that, clearly, the drug is effective.

Sam and other children and adults with Morquio disease are not the only people being let down. There are other conditions. I have been working with Members and organisations on the mutation of Duchenne muscular dystrophy and tuberous sclerosis. We have come together to campaign as one to say that we need a better way of approving drugs for ultra-rare conditions. At the moment we have a system in this country where people with ultra-rare diseases are discriminated against, and that must stop.

[Rehman Chishti (Gillingham and Rainham) (Con)]

I pay tribute to the hon. Gentleman for the work that he has done and for securing this debate. On other rare conditions, I have a very sick two-year-old in my constituency who suffers from neuroblastoma, a rare form of cancer that only 100 children suffer from each year. It is difficult to accept that my constituent has to raise money and travel to the United States to get treatment. We should ensure that children or anyone suffering from rare conditions, such as Ruby Young and those in the hon. Gentleman’s constituency, get the treatment they need at the first port of call in their own country.

[Greg Mulholland]

The hon. Gentleman is right to say there are other such conditions. I will not be able to mention them all today, but other Members may wish to do so. I will concentrate on the three conditions that I have been working on: Morquio, Duchenne and tuberous sclerosis. Some 180 people suffer from those conditions. I am sorry to say that all those people and their families have been hugely let down by the repeated failure of process by NHS England and by the thick wall of bureaucracy and utter lack of accountability.

--- Later in debate ---

[Greg Mulholland]

The Batten Disease Family Association explained that to me when I met with representatives, but unfortunately that is not even in the consideration for 25 June. That is why we need an overhaul.

We have a five-year Parliament. I hope that the Minister will serve as the Life Sciences Minister for a considerable time, if not for the whole Parliament. His challenge as the Life Sciences Minister, as well as dealing with the accountability deficit that clearly exists in NHS England’s decision making, must now be to initiate a proper process for the approval of drugs for rare conditions. Of course there are cost implications, and of course drugs must be effective, but the situation is that there are effective drugs that this country is not funding, while other countries with less strong economies are finding the money in their health services to fund them.

[Rehman Chishti]

The hon. Gentleman talks about funding, but one aspect that precedes funding is awareness of such diseases. For example, the Government’s “Be Clear on Cancer” campaign does not take into account rare conditions and cancers such as neuroblastoma, from which my constituent, who is near death, is suffering. The Government must ensure that rare conditions are part of the bigger campaign, so that the people suffering from them get the help that they need as well.

Dangerous Driving

Debate between Rehman Chishti and Greg Mulholland

Monday 27th January 2014 Commons Chamber

[Greg Mulholland]

I thank my hon. Friend. That is another example of a sentence, given only today, that surely cannot reflect the reality of killing someone through criminal driving. I use the phrase “criminal driving” very deliberately. This debate is entitled “Dangerous Driving”, but we are all aware that what we are actually talking about are various forms of criminal driving—any form of it that has resulted in someone losing their life. One of the weaknesses in the system is the confusion in both the sentencing framework and the sentencing guidelines as to whether particular forms of criminal driving should be regarded as particularly serious. I will come back to that important point.

I wish to relay to the House briefly the awful case of Jamie Still, who was just 16 years old, with everything to live for. He was a schoolboy in Otley, a market town in my constituency. He was out with friends on new year’s eve in 2010. At around 9 o’clock, when crossing a road in the middle of town, he was hit by a car that was travelling at 50 mph in a 30-mph shopping zone. He was flung through the air. He died later, as a result of the injuries that he sustained, in his mother’s arms; his mother managed to get to see him, but his sister did not. As people were celebrating new year’s eve and seeing in the new year, that family lost a beloved son and brother, and the community lost a young man with an awful lot to give.

Part of the awful injustice is that despite the seriousness of the crime—a crime is clearly what it is—the perpetrator was allowed to continue driving, right up to when he was sentenced. He lived only a few miles away, and was seen driving in Otley—the very place where he ended this young man’s life. It is hard to imagine the distress that that must have caused Jamie’s mother, Karen, and his sister, Rebecca. The man responsible was found to have been twice over the drink-drive limit. Eight months later, he was sentenced to four years, but the sentence was reduced to 12 months after he wrote to the judge—not the family—to say how sorry he was. That followed a two-year reduction in his possible sentence after he pleaded guilty, even though, at previous court hearings, he had not done so.

[Rehman Chishti]

The hon. Gentleman said that the offender was twice over the limit when the incident occurred. Does he agree that the laws on drink-driving and sentencing are completely inadequate? For example, the maximum first sentence for drink-driving is six months. Whether it is someone’s second, third, fourth, eighth, 10th or 15th offence, the maximum they can get is six months. That is completely unacceptable. I introduced a Bill in the House saying that repeat offenders should get stiffer sentences. Does he agree that that deserves serious consideration?

[Greg Mulholland]

I thank my hon. Friend for raising that issue. He is quite right. He has exposed to the House yet another area where the law simply does not make sense—it is not common sense.

I have also had to deal with the awful deaths of David and Dorothy Metcalf, who were killed a year after Jamie Still, on new year’s day 2012, on the Stanningley bypass in Leeds. They were an honest, hard-working couple, who had just begun to enjoy retirement. They were hit by a driver—rear-ended—who was speeding at 100 mph. The impact of the crash caused the Metcalfs’ car to be thrown 10 feet in the air before it flipped over. Mr Metcalf died instantly, and Mrs Metcalf some time later in hospital. The driver, Mr Eduard Mereohra, was a Moldovan national in the UK illegally. He had been drinking all night at a party, and even the next morning he had twice the permitted level of alcohol in his system. He had previously been deported for entering the UK illegally, but somehow he had entered the country illegally for a second time. He fled the scene, only to be caught by a heroic bystander, guided by another heroic individual who told the police where the man was fleeing, having witnessed the incident from their house.

When he was caught, Mr Mereohra first tried to deny being the driver. Later he tried to blame David Metcalf for the accident. As if that was not bad enough, to make it even more galling, he had been caught speeding a few weeks beforehand, yet nothing had been flagged up to say that he was here illegally. There was no evidence at all to suggest that he had a valid driving licence, and it could not even be established that he had a national insurance number. I still have not received an answer to that question.