Drugs (Ultra-rare Diseases)

Debate between George Freeman and Greg Mulholland

Tuesday 20th January 2015 Westminster Hall

[George Freeman]

I understand; my right hon. Friend makes an important point. In fact, I raised it this morning in my meeting with NHS England. My understanding is that NHS England will continue to consider individual applications for Translarna through its individual funding request process from patients who may be exceptional. However, my understanding is that such cases really do have to be exceptional. In reality, the members of the whole group that we are considering are more or less suffering from the same condition and therefore they may not qualify under those criteria. I merely share that with my right hon. Friend because I myself raised that point this morning with NHS England.

[Greg Mulholland]

I stress to my hon. Friend the Minister that we are discussing two conditions and two drugs, Translarna and Vimazim. I also have to say to him again that we understand that NHS England has to put a process in place; of course it does, because the process it had put in place was not fit for purpose. Does he accept that NHS England has a legal, as well as a moral, responsibility in this regard? It certainly has a moral responsibility. Having said that the decision will be made on 15 December, NHS England cannot now hide behind saying, “There needs to be a new process,” when this situation is its fault in the first place. We are now a month on from that initial deadline, and there needs to be an interim solution to somehow allow these 138 children to access the two drugs in the meantime, and before that process is complete.

[George Freeman]

I certainly accept the moral case; I think that everyone would accept that there is a moral duty to get this matter right and to try to make these decisions on the right basis and on the basis of the right evidence. The legal position, given the legal challenge, is more complicated, and it has triggered a formal process of reappraisal. As I have said, I will meet NHS England officials to urge them to try to expedite that process as best they can. However, I must stress that I do not want to get into a situation where we compromise due process and inadvertently undermine a case. What I want to see is a NICE decision being made as quickly as possible, and I will urge NICE to expedite that process in every way it can, so that we get the right decision that we all want.

Oral Answers to Questions

Debate between George Freeman and Greg Mulholland

Tuesday 25th November 2014 Commons Chamber

[Greg Mulholland (Leeds North West) (LD)]

My constituent, six-year-old Sam Brown, is one of 100 people with the rare disease Morquio. His family live in a state of anxiety because they do not know whether the drug Vimizim will be approved for further use on 15 December. Will a Minister please meet me and Katy and Simon, Sam’s parents, to give Sam the Christmas present he needs and to keep Sam smiling?

[The Parliamentary Under-Secretary of State for Health (George Freeman)]

I would be delighted to meet my hon. Friend and his constituents to review that very important issue.

Oral Answers to Questions

Debate between George Freeman and Greg Mulholland

Tuesday 21st October 2014 Commons Chamber

[George Freeman]

Yes, I absolutely sympathise: I understand how important this is to local patients and their parents. As my hon. Friend knows, NHS England’s review of children’s heart surgery goes back a very long way—to the Bristol royal infirmary issues in the 1980s—and I know that Leeds and Newcastle Members are actively engaged on it. I can say that there is no immediate threat to any congenital heart surgery unit. NHS England has held a drop-in session with all MPs, and I encourage Members to make representations to the consultation on the national review.

[Greg Mulholland (Leeds North West) (LD)]

The reality is that NHS England has made a mess of this. I hope that it will finally apologise when the third stage of the review is published. On the process that we have now, will my hon. Friend confirm that it is an open and fair process that will allow all units, including Leeds, to reach the important standards that we want for all our units?

[George Freeman]

My hon. Friend makes an important point. This is a matter for NHS England to deal with. I have made inquiries to ensure that the process is being followed as it should be. As I say, there is no immediate threat. The issues around the provision of congenital heart disease services are not limited to Leeds. NHS England is conducting a nationwide review of congenital heart services, which will look at the whole of life care pathways available across the country. The truth is that congenital heart diseases are often very serious illnesses affecting life expectancy and quality of life for patients, who will expect NHS England to put in place the very highest quality care and service available.