Batten Disease: Access to Drugs

John Bercow Excerpts

Tuesday 16th July 2019 Commons Chamber

[Andrew Griffiths]

On a point of order, Mr Speaker. This important debate is about whether this drug is going to be available for these young children, and you will share my concern that we are not going to get the answers we want because it is supposedly prevented by a judicial review. Can you rule on whether we should be able to have the information we seek in this debate for the parents who are watching?

[Mr Speaker]

I am extremely grateful to the hon. Gentleman for his point of order. He anticipates me, because his discernment is such that he will have observed me in conversation with the Clerk at the Table. Let me say, for the avoidance of doubt, that the content of the Minister’s reply is, of course, a matter for her, and it is not something with which I would seek to interfere. That is not for me.

However, for the purposes of clarification, I want to make this point. I am not aware that this matter is sub judice, as I have not received prior notification that it is. I am not aware that it is, I have not been informed that it is, and the Clerks have not been informed that it is. If it is not sub judice, nothing whatsoever precludes the Minister from commenting on this case. If it is sub judice, as colleagues will know, it is within the competence —I use that term in the technical sense—of the Chair to waive the sub judice rule, which it would most certainly be my instinct to do.

What the Minister says is a matter for the Minister, but it would not be right, as far as I can tell, to say that it is not possible, in a legal sense, for the Minister to comment on this matter. The Minister is the Minister, and the Minister’s answer on the specifics is sought. If the Minister wishes to proffer that answer, she can do so.

[Caroline Dinenage]

Thank you, Mr Speaker. You have made my position even more difficult. I am very grateful for your advice.

The advice I have been given by the legal team within the Department of Health and Social Care is that anything I say could potentially influence the outcome of judicial proceedings that may be ongoing.

[Mr Speaker]

The Minister is nothing but solicitous and courteous. I have found her unfailingly courteous in her dealings with me over many years, and I certainly do not seek to make life difficult for her, but my concern is with the rights of Members of this House and of the people they are here to represent.

Frankly, if lawyers within the Department of Health and Social Care are of that view, it would have been courteous to consult the officials of the House. As far as I am aware, the officials of the House have not been consulted, and I have not been consulted about this matter. I am simply saying that if the Minister wishes to respond to the specifics, which manifestly the hon. Member for North East Somerset (Mr Rees-Mogg) was going to raise—that is the rationale for the debate—it is perfectly open to her to do so.

If the hon. Member for North East Somerset is not able to secure satisfaction on this occasion—the Minister must judge what she wants to say in response—and if he wishes to pursue the matter further in another Adjournment debate, during the course of waiting for which further time will unfortunately have been lost, that debate will be available to him. I am determined that this matter will be effectively raised in the Chamber of the House of Commons by the hon. Gentleman and by other Members.

[Caroline Dinenage]

Thank you for clarifying that, Mr Speaker. I very much share the passion that I detect my hon. Friend the Member for North East Somerset feels about this issue, which I know is shared by Members on both sides of the House.

--- Later in debate ---

[Mr Speaker]

Of course the Minister should have the opportunity to do so, but I think it is only right that I hear the point of order, if it is a genuine point of order.

[Andrew Griffiths]

Could you explain the rules to me, Mr Speaker? If it is proved that today’s Adjournment debate is not sub judice and that the information could have been proffered to the House in a way that would have satisfied both my hon. Friend the Member for North East Somerset (Mr Rees-Mogg) and you, would it be in order for the responsible Minister to come to this place to make a statement before the recess, so that those valuable days are not lost? Do you think it would be sensible for the Minister to make that commitment now?

[Mr Speaker]

It is certainly open to the Minister to do so, and I think that it would, without question, be to the advantage of the House if such an oral statement were proffered before the House goes into recess. What I should say to the hon. Gentleman and to other colleagues is that, to my knowledge—forgive me, but I am dealing with this matter literally on my feet—the case has not been set down; it is not listed for court consideration. There are no current proceedings dated. Therefore, as we understand it—my advisers and I—it cannot be said to be sub judice. Sometimes a judgment might be made about the possibility of prejudicing a case—that is a wider consideration–but the real issue is: is it sub judice? Our answer, on the best information available, is that it is not, and so I think a statement would be helpful. Alternatively, if Members wish to exercise their ingenuity in raising important and of course legitimate points of order, and the Minister wishes in the meantime to consult her officials so that a full and detailed response on the specifics can be provided, that is open to her. I recognise that that might be challenging at such short notice and she may not wish to do that, but it would certainly be helpful to have a substantive response, preferably this evening, and a full oral statement before we go into recess. I would say to the House that I am giving the ruling that I am giving both on the basis of a decade’s experience as the occupant of the Chair and on the strength of top-quality procedural advice.

[Caroline Dinenage]

Thank you, Mr Speaker. I am very grateful—

[Mr Rees-Mogg]

On a point of order, Mr Speaker. My point of order follows on from what you said and I hope it may be helpful to the Minister in giving her a moment to reflect on what you have just said. I would express a broader concern on this sub judice question, because, as you rightly said, it is always the prerogative of this House to discuss what it wishes to discuss, regardless of what is going on in any court. The sub judice rule has only ever been a self-denying ordinance of this House, to feel that it should not trample on things that were immediately before another court, rather than something that can be enforced upon us. In that respect, we are different from any other place in the country—other than of course their lordships’ House—which would be subject to sub judice as a matter of law. We are subject to it only in so far as we feel that it is wise to be cautious and prudent, and not to interrupt another of the separated powers within our judicial system. Therefore, it seems to me that whenever Ministries decide to cite sub judice rules, it would be wise to have consulted Mr Speaker or one of the Clerks in advance, in order to have some clarity before the debate begins.

[Mr Speaker]

Yes, it is a matter of prudence on the part of the House of Commons; it is not a cloak behind which the Executive branch should seek to hide. I know that the Minister would not attempt to do so, but any advice that might be thought to be intended to allow that to happen would be ill viewed by right hon. and hon. Members, and most certainly by their constituents.

[Caroline Dinenage]

I take on board all the comments that you have made, Mr Speaker, and indeed that hon. Members have made. I need to go away and reflect on this. I would like to make some progress with what I feel confident to be able to talk about today, and then, if inspiration does not approach me from anywhere else in this Chamber in the next few moments, I will commit to coming back with a fuller response if that is possible before we break for recess, if that would be acceptable to you, Mr Speaker.

--- Later in debate ---

[Mr Rees-Mogg]

We have 40 minutes left, Mr Speaker, so we are not short of time.

[Mr Speaker]

No, we have plenty of time. We can continue until 7.30. [Interruption.] Oh yes, we have plenty of time. And of course, there will be an opportunity for either a ministerial statement or an urgent question between now and Thursday, so we have, if I may say so, bucket-loads of time to deliberate on this important matter. I know that that message will be extremely well received by the Minister.

[Caroline Dinenage]

Thank you, Mr Speaker.

The legal position, as I understand it, is that NHS England and NHS Improvement have been in discussions with the manufacturer BioMarin for some time to try to seek a deal that would enable NICE to recommend the drug for use on the NHS, but so far an agreement has unfortunately not been possible. As hon. Members know, and as I said at the beginning of my speech, NICE’s assessment is currently subject to an ongoing legal procedure. NICE has published its draft recommendation and was unfortunately unable to recommend the use of the drug, despite its meeting the criteria for consideration under the highest cost-effectiveness threshold. NICE has not yet re-published its final word on this issue, and that may provide more clarity. In the meantime, it is of course open to the company to enter into an agreement with NHS England that would make the drug cost-effective and would make the legal procedure unnecessary.

--- Later in debate ---

[Andrew Griffiths]

On a point of order, Mr Speaker. I seek your advice, because we have a precedent for a situation that can arise on numerous occasions. In the nine years I have been in the House, I have heard of many debates in which right hon. and hon. Members have brought forward demands for treatments for rare diseases. We call the Minister to the Dispatch Box to answer—to be accountable. If we have a situation, going forward, where the Minister can claim sub judice, on advice from officials—it is not the Minister; she is taking advice from her Department—and be allowed to hide behind that cloak of anonymity and prevent the House from doing its job, which is to establish the facts and find out the truth behind the matter, that clearly prevents the House from being able to do its job.

You would share my concern, Mr Speaker, that that would prevent Members in this House from serving their constituents in a way that they would be expected to do. Therefore, can you ensure that you will go away today and look at this situation and make sure that, if this procedure has gone wrong, Departments are told very clearly that they cannot hide behind sub judice and that they must be candid with this House, regardless of the advice they have been given by officials.

[Mr Speaker]

That is a most helpful point of order from the hon. Gentleman, to which, essentially, the answer is a simple yes. I will happily go away and reflect on how Departments might usefully be advised to proceed in these matters. Beyond that, there are two points. First, as I have been advised, the matter is not sub judice. It has been suggested to me by a very constructive member of the Treasury Bench that advice to the effect that the case might be sub judice was proffered, though not to the particular Clerk whom I have been consulting, but that advice was not judged to be correct. Put simply, as far as we can see, the matter is not sub judice.

Secondly, however, and this is an extremely important point in the context of the specific debate that the hon. Member for North East Somerset has secured, the issue is that of ministerial intervention, and therefore whether or not the case is sub judice—I repeat that I am advised that it is not—the matter of ministerial intervention is manifestly one for Ministers, and it is therefore a matter upon which a Minister from the Bench can comment and would widely be expected to do so. Frankly, this question of the legal status is not germane to the capacity of a Minister to respond to the specifics of the debate. That is the situation.

[Caroline Dinenage]

Thank you, Mr Speaker. I do apologise for the further confusion that is here today. We are trying to seek further guidance on this—

[Caroline Dinenage]

In a moment.

The advice that I have been given is that I have to be very careful on the legal procedure because of the fact that it is not a legal procedure between individuals and the Department, but between individuals and NICE. I do not want anything that we say potentially to negatively impact on a family’s opportunity to get these very important drugs for their children.

[Mr Speaker]

Very important decisions are subcontracted to NICE, but policy responsibility, as the hon. Member for North East Somerset has pointed out, is that of the Government. We do not have Government by NICE; we have Government in the case of health policy through the Department of Health and Social Care.

[Caroline Dinenage]

I give way.

[Mr Rees-Mogg]

I am grateful to the Minister for giving way. I understand that discussions have been rapidly going on while we have had points of order and various other things happening in this Chamber. I am not sure whether this is orderly, Mr Speaker, but I happened to notice that there has been a return to the officials’ box of advisers. I wonder whether inspiration might now be forthcoming and heading in the direction of the Minister and whether I am now giving time for such advice to be passed through, or whether the telephone calls that I heard were taking place have not been as fruitful as I might have hoped.

[Mr Speaker]

I am not in a position to know that immediately for the simple reason that the Speaker does not possess eyes in the back of his head, and I have been focusing on the hon. Gentleman, the Minister and other colleagues, rather than on the occupants of the officials’ box. I have seen a note that has been circulating and a Minister is attempting to assist one of my advisers. I assume the Minister is attempting to do so on the basis of information provided. Whether there is something that is so valuable that the Minister in question is about to furnish the answering Minister with it, I do not know, but I am allowing a suitable opportunity for that missive to be passed to the Minister for Care, who is, of course, entitled to digest and reflect upon its contents and to decide in the light thereof how she wishes to continue, but I repeat that there is no shortage of time. I am very grateful to the Minister for her characteristic courtesy.

[Caroline Dinenage]

We are in a difficult position because the advice that has been forthcoming from the Department of Health and Social Care is not the same as the advice being given by the brilliant Clerks here. That puts me in a very difficult position, which is why I would like to commit to returning to the House with a statement once I have been able to pursue this matter a little bit further.

The Government want patients, including patients with rare diseases such as Batten disease, to be able to benefit from effective new treatments. It is in the interests of all NHS patients that we have a system in place for making evidence-based decisions on whether new medicines should be made routinely available to patients. That is why we have NICE, which makes independent, evidence-based recommendations for the NHS.

--- Later in debate ---

[Caroline Dinenage]

Of course I will commit to doing everything I can to making sure that all the very valid and easy-to-understand sentiments that have been expressed by Members across the House are sent to all the parties involved in this discussion. I completely share Members’ desire to find a resolution to this and ensure that families get the answers they need. In the meantime, I thank all Members for the part they have played in today’s debate, the questions they have asked and the great interest they have shown in this issue. As I say, I will come back to the House shortly with fuller answers to some of those questions.

[Mr Speaker]

Ordinarily, the proceedings would now conclude, and they will do so shortly. However, I think it important that our proceedings should be intelligible not only to right hon. and hon. Members but others who are interested in our proceedings but are not Members of this House. To try to achieve that objective, I want to add, by way of conclusion, the following.

I am advised by my officials that the Department of Health and Social Care claims that this matter—the subject of the debate—is sub judice because an application for a judicial review has been made. In the light of that, let me explain. Under the sub judice resolution of this House,

“Civil proceedings are active when arrangements for the hearing, such as setting down a case for trial, have been made”.

The Department has not supplied evidence that this test is met. Therefore, I stand by what I said earlier on advice.

By way of conclusion, I say to the Minister—echoing, I think, the sentiments of colleagues—that her commitment made in the circumstances, at very short notice, to return to the House before the summer recess to make an oral statement is appreciated, and we look forward to that statement taking place either tomorrow or on Thursday. Policy is a matter for the Government and not the Chair, but the hon. Member for North East Somerset and other colleagues who are similarly interested may rest assured that, for so long as this matter is not resolved to their satisfaction and they wish to bring it to the House for questioning, interrogation and debate again, as far as the occupant of the Chair is concerned, there will be multiple opportunities for them to do so. The matter will not go away.

I thank the Minister once again for her courtesy and consideration in difficult circumstances, and I thank all Members who have contributed to the debate not on their own accounts but in the interests of their constituents, very anxious parents and families, and sympathetic people right across the country.

Question put and agreed to.