(4 years, 10 months ago)
Commons ChamberOn a point of order, Mr Deputy Speaker. Frankly, I am astonished that at such short notice the Prime Minister has sent a note to the Liaison Committee refusing to appear before us in the morning. This is the only Committee that can call the Prime Minister to account, and it allows us to ask detailed questions with follow up on behalf of the public. This is now the third occasion on which the Prime Minister has cancelled. May I seek your guidance, Mr Deputy Speaker, because this is entirely unacceptable?
I recognise that three times is very difficult, and quite rightly we have to hold all officers, even the Prime Minister, to account. However, I also recognise that these are very difficult times at the moment, and I would hope that the point of order has been listened to by Ministers and that we can come forward with a date for the Prime Minister to appear, but, more importantly, that the Liaison Committee can get that meeting in—and, as Chair, I recognise the need to do so. So, both ways, there is a need to try to make sure we can make this happen.
Further to that point of order, Mr Deputy Speaker. As a member of the Liaison Committee as well, I can say that of course the Liaison Committee is disappointed that the Prime Minister is unable to appear before it tomorrow, but the truth is that the Prime Minister is held to account in the Chamber by all Members of Parliament every week for over an hour, so it is simply not true that the Prime Minister is not being held to account.
I can see that tensions are running high. I have given a very honest answer that I think is fair to both sides.
Further to that point of order, Mr Deputy Speaker. As the Chair of the Liaison Committee, the hon. Member for Totnes (Dr Wollaston), has said, this is now the third time, and the purpose of the Liaison Committee is to take more detailed evidence and scrutinise the Prime Minister in a more detailed way. The Prime Minister has said that he does not want to come now until five or six months after his initial appointment; that means in December or January. At such a time when there are so many important decisions to be made for the country, surely it is utterly irresponsible for the Prime Minister to refuse to answer detailed scrutiny questions from the Committee, and if he has done this three times before, how on earth can we have any confidence in a December or January date either?
Well, if we can get to January and February that is more than I am expecting at the moment. I hope that the message has gone out that three times the frustration has quite rightly been there. I do not know the reason for the decision tomorrow, but I do know we are in very serious and dangerous times in the future of this present Parliament. I am sure, as I said earlier, that that message will go back, and I would like to think that the earliest possible date will be proposed—sooner rather than later; this year, not next year, unless other events overtake us.
Further to that point of order, Mr Deputy Speaker. Can you advise me whether there is any way we can highlight in this House the profound injustice whereby some Members can achieve high office in the Committee system by virtue of their party affiliation, yet continue to hold high office after they have abandoned their party?
I am not going to get into that argument. I have enough on my plate without going down that road.
Further to that point of order, Mr Deputy Speaker. I think that that last comment was unworthy of the hon. Member for Wycombe (Mr Baker). The Prime Minister got out of the first date by, I believe, proroguing Parliament. Clearly, the programming of the business for this week, which would have seen us on the Report stage on the withdrawal agreement Bill, would have meant that the Prime Minister, quite rightly, would have had to be in the Chamber. Is it in order for the Prime Minister to use smoke and mirrors to pretend that he is coming to the Liaison Committee but always find a way to wriggle out of the back door and never be accountable?
I am not going to enter into speculation. I have been very clear, and I have made the point. I am not going to change any more.
Further to that point of order, Mr Deputy Speaker. Further to some of the comments that have been made, may I seek your advice about the accountability of the Prime Minister? Truly, he is accountable to the Liaison Committee as well as to the House, and in other matters—
Order. I have been down that road already, and I am not going to change what I have said.
Further to the point of order made by the hon. Member for Wycombe (Mr Baker), Mr Deputy Speaker. May I seek your confirmation that Select Committee Chairs are elected by the whole House of Commons because they are trusted not to take a tribal party political viewpoint in their role as Select Committee Chairs?
On a point of order, Mr Deputy Speaker. In response to my question this morning about compensation for the victims of the contaminated blood scandal, the Minister for the Cabinet Office and Paymaster General suggested that the Government were waiting for
“the determination of legal liability, to which the inquiry’s deliberations relate”,
but surely he must recognise that under the Inquiries Act 2005 a public inquiry cannot determine liability, so how can I call for the Minister for the Cabinet Office to correct the answer that he gave?
You have done it for me. Those on the Treasury Bench have heard you.
(4 years, 11 months ago)
Commons ChamberThe hon. Gentleman makes a point that I will come on to about how the decisions need to be made on the medical evidence and with the voice of the consultants being clearly heard by those making the decisions.
There is no cure for this condition, but two years ago my consultant’s neurologist advised that Maraviroc had had a positive effect on patients suffering from PML in relation to her condition, immune reconstitution inflammatory syndrome in multiple sclerosis. An individual funding request was submitted by my constituent’s consultant, national expert Professor Ciccarelli at the National Hospital for Neurology and Neurosurgery. The application was refused and a subsequent appeal was also unsuccessful—this process went on through 2017 and 2018—seemingly on the same basis as was given to me in writing in October by NHS England, which was that the
“use of Maraviroc for this condition is currently seen as experimental as the current evidence is limited to very small observational studies. NHS England has concluded that there is not sufficient evidence to support the routine commissioning of this treatment for the indications listed.”
The effect on Amarjit was heartbreaking. I met Amarjit and her friend and advocate Kartik. She had a wheelchair and a walking stick, and even the most basic activities were a struggle. She had decided to fund the drug privately from her savings. Maraviroc had remarkable results for her—importantly, that was also the opinion of her consultants—without any side effects. Other treatments that the NHS had sought to prescribe, such as MRIs and monthly steroids, were not just neutral but net negative. Amarjit and Kartik explained the impact that Maraviroc had had on Amarjit’s health and quality of life. I was just staggered when she told me:
“I can talk. I can walk. I can go to the bathroom on my own”—
things that we take for granted. Clinically, the PML lesion appeared inactive and there was a reduction in the inflammation around her brain.
The drug costs around £480 a month, but by the end of June this year Ms Rai could no longer afford to pay for it herself, so she has since been without it. Although her health has been stable so far, such is the condition that it could dramatically change at any time.
Aside from the issue of funding, I have been surprised over the past year by inconsistencies in NHS policy and advice. We all believe in an NHS that is free at the point of need. This is a situation where the patient, leading neurologists and all involved in her care agree that she should have the drug. In November 2018, consultant neurologist Dr Michael Gross, who was also supporting Amarjit’s care as an expert advocate, wrote to Kartik:
“Thank you for confirming further information about Amarjit Rai... Professors Johnson and Ciccarelli agree that this is the appropriate treatment for Amarjit. Long term steroids have already generated severe osteoporosis in 2016 and are not her choice.
You will have already proved in what is an N=1 trial that her treatment would appear to be effective. There will almost certainly never be the size of trials in this rare disorder that would allow a definitive statement by a funding organisation.
I think we have to ask who is making the decision, given that there are now three senior consultants confirming this is the right decision… Quite frankly I am appalled by the lack of humanity that is being demonstrated here.”
In November 2018 I wrote again to the Minister. I received a response from Lord O’Shaughnessy in the other place, who helpfully said the following:
“Maraviroc is not licenced for the treatment of symptoms of PML. There are clinical situations when the use of unlicensed medicines or use of medicines outside the terms of the licence, known as off-label, may be judged by the prescriber to be in the best interest of the patient on the basis of available evidence. The responsibility for that falls on healthcare professionals.”
Sadly, this made no difference.
Following the lack of progress, I wrote again to the Secretary of State in March 2019. I quoted the helpful response that I had received from Lord O’Shaughnessy. The Health Minister in the other place, Baroness Blackwood, responded in May and referred again to the individual funding request process. She stated that the IFR can be considered only if the patient can be demonstrated to be clinically exceptional. She said that
“an IFR can only be considered if the patient can be demonstrated to be clinically exceptional compared to the wider group of patients and is likely to derive greater benefit from the treatment.”
At face value, all of this would appear to be true for my constituent, but the use of Maraviroc is an area where policy appears to be in some confusion.
In response to a parliamentary question I asked in July about the assessment that NHS England has made of the availability of Maraviroc to patients with PML, a third Health Minister, the hon. Member for South Ribble (Seema Kennedy), wrote:
“We are informed by NHS England and NHS Improvement that it does not commission Maraviroc for progressive multifocal leukoencephalopathy… NHS England and NHS Improvement have published a do not commission policy for ‘Natalizumab-induced progressive multifocal leukoencephalopathy in relation to immune reconstitution inflammatory syndrome in multiple sclerosis.’”
That response seems to contradict earlier responses and advice. First, “does not routinely commission” is different from “does not commission”. Secondly, it made no reference to the IFR process, which two Ministers had previously mentioned.
I tabled a further parliamentary question last week to ask what assessment the Secretary of State had made of the effectiveness of Maraviroc in patients with PML. A fourth Health Minister, the Under-Secretary of State for Health and Social Care, the hon. Member for Mid Bedfordshire (Ms Dorries), responded to my question. The response I received today was mind-boggling:
“Maraviroc is currently authorised for the treatment of patients who are infected with HIV type 1. The Medicines and Healthcare Products Regulatory Agency which is responsible for the regulation of medicines in the UK is not aware of any application for use in patients with PML and therefore cannot comment on the efficacy of this drug in patients with PML.”
It might be helpful if I highlight for the Minister findings from wider medical journals that the House of Commons Library has helped me to compile. In December 2016, the American Academy of Neurology published an article entitled “Severe early natalizumab-associated PML in MS: Effective control of PML-IRIS with maraviroc”. A summary of a case involving a 55-year-old Caucasian HIV-negative man diagnosed with relapsing, remitting MS in 2013 shows that that led to a subsequent diagnosis of PML. Clinically, the patient deteriorated rapidly, according to the article. Oral Maraviroc was initiated six days after his admission. Eight days after Maraviroc initiation, MRI follow-up revealed stable PML lesion size. Over the following weeks, the patient improved continuously. After 25 weeks of Maraviroc treatment, the John Cunningham virus DNA was no longer detectable. Maraviroc was continued and well tolerated at a stable dose. The patient survived both PML and IRIS.
A subsequent article was published by the American Academy of Neurology entitled “Maraviroc as possible treatment for PML-IRIS in natalizumab-treated patients with MS” in December 2016. It cited a 34-year-old man treated with Natalizumab for three years without previous immuno-suppression. After a period of time, the patient was admitted with seizures, headaches, and impaired memory, and an MRI scan subsequently confirmed PML. Twelve months after diagnosis with PML and six months after the start of Mariviroc, PML-IRIS lesions were resolved, and no new MS disease activity was detectable.
An article in 2017 by Steiner and Benninger published by the American Academy of Neurology built the medical explanation for why Maraviroc had been effective in cases of PML in MS sufferers. In summary, the condition for which the cause is believed to be the John Cunningham virus, which infects the central nervous system in patients with low immune conditions, became more prevalent and was observed in around 5% of patients with HIV prior to the availability of highly active antiretroviral therapy, or HAART. The article goes on to describe how the era of
“monoclonal antibodies for immune-mediated conditions such as Natalizumab for MS and Crohn disease heralded another context for PML. As of November 2016, there have been 698 reported cases of PML under natalizumab.”
The research goes on, and it is true that some research such as that published in The Journal of the Neurological Sciences in July 2017 confirms that it does not work in all circumstances, and steroids may be more effective in some patients. However, an article in Neurology Times in January 2018 states that in PML treatment options are limited. Maraviroc has been used successfully in some PML patients to avoid IRIS, although not all patients respond to Maraviroc. It recommends further research and testing in identifying patients at risk of IRIS and tailoring treatments accordingly.
In that context, let me make reference to the urgent clinical commissioning policy statement on Natalizumab-induced PML, which was published by NHS England in March 2018. It said:
“It has been assessed that the development of a full policy is not needed at this time as there is currently little evidence into its effectiveness for this indication”.
I do not believe that that policy statement takes account of all the research available or indeed that which has appeared subsequent to its publication. The research is more nuanced, the medical benefits for my constituent are undeniably clear, and the denial of funding is inexplicable to her and renowned experts in the country.
Maraviroc, or Celsentri, as defined by the European Medicines Agency—formerly in London, it is now based elsewhere in the European Union—is a medicine that is routinely prescribed for HIV. Although it does not cure HIV infection or AIDS, it may hold off the damage to the immune system and the development of other infections and diseases.
Medical research has identified that the JCV most associated with HIV patients with low immunity has found another context in patients with PML. My constituent’s condition is incredibly rare, affecting, potentially, 10 or fewer people in the country. Given that very few options are available, she is not the only patient for whom, in anecdotal studies, the drug Maraviroc has shown remarkable results. With no other options available, my very ill constituent has been paying £500 a month privately for the past year to fund Maraviroc herself, but she can no longer afford to do so. Amarjit’s consultant neurologist and other specialists support her receiving the treatment. There is an irony in the fact that more is potentially being spent by the NHS in a month on treatment and tests that do not benefit her as much, and have damaging side-effects. The IFR system in the NHS should be able to review and respond to that situation on the basis of medical need, and I cannot see how that has been done in this case.
Will the Minister tell me how her Department liaises with and challenges NHS England on cases such as this, and how well-researched the Department’s responses to me have been? Will she tell me with what medical advice the treatment has been refused, although three of the leading experts in the country support it in this rare case, and whether their advice can be shared with my constituent and her consultant, Professor Ciccarelli? Will she also agree to a meeting with me, my constituent and her consultant, and a senior member from NHS England to discuss the IFR process?
This is a matter of £500 a month, and of demonstrable medical benefits to my constituent. I should be grateful for the Minister’s response, and her advice on how we can move forward.
I welcome the Minister to the Dispatch Box. I believe that this is her first outing. She is obviously held in high esteem, given that so many Whips are present at once.
(5 years, 3 months ago)
Commons ChamberMay I just say that to get everybody in and give them equal time, five minutes will be the order of the day?
I am very pleased to follow the hon. Member for Westmorland and Lonsdale (Tim Farron), and to talk about the Government’s commitment to public health. This Government are providing an additional £4.5 billion for primary and community health services as part of the long-term plan for the NHS. In ensuring that this plan operates properly, a renewed focus has been put on prevention. When the Prime Minister announced the £33.9 billion funding boost for the NHS, she said that the accompanying 10-year plan must have that focus on prevention. As hon. Friends have said, none of this is possible without a strong economy and without a Government who understand that tackling the debt and the deficit is really important, because we cannot have the services we want unless we do that.
One of the key parts of the plan is the importance of new screening methods. Earlier testing for bowel cancer is one of the issues that will be dealt with. I want to say a big thank you for the grant of £79 million that we got to build new theatres at Musgrove Park Hospital, which is Somerset’s main hospital but also a really big hospital providing services across the south-west. With part of that grant, it is building a whole new endoscopy service and suite. This really will help the population not just of Somerset but of the whole south-west with early diagnosis, which is the way we have to go. We also have a new MRI scanner, thanks to the community, which contributed towards it. That will help a great many people by picking up diseases early.
Somerset has a wonderful record on diabetes. Diabetes is a big issue, and amputations are very costly. One amputation costs £20,000, and a person with diabetes who has a limb amputated—sadly, that is what can happen—unfortunately then has a life expectancy of only five years. Somerset has implemented a diabetes foot pathway, which cut amputations from 122 to 66 in 2017. Not only are people living better and more healthily, but that pathway is saving the NHS a huge amount of money. That is the kind of model we need to put in place.
The public health grant remains ring-fenced, which I am very pleased about, and protected exclusively for improving health, but local government spending on health is not just about the grant. It is about local authorities being able to prioritise what they think is important, and indeed they are, with a range of innovative models in Somerset.
One third of Somerset residents will be 65 or over in 10 years’ time, compared with 21% nationally, and that has to be dealt with as a matter of urgency. Somerset County Council is responsible for all adult social care, children’s services and special needs, which take up 70% of its budget. While I welcome the Government giving another £240 million to adult social care and enabling local authorities to add adult social care to their precept, there are still pressing issues in Somerset that must be dealt with relating to the elderly population. Despite a great number of pressures, the council has done really well in sorting out its finances thanks to some tough decisions, but we have to make the resources go further. The council will be the subject of a “Panorama” documentary soon.
We must have better models. One model I want to mention is micro-providers. A list of self-employed, accredited providers can be accessed for all kinds of care and health needs across Somerset, so that people can stay at home, and providers go in to help them. We are using it at home for my family, and it really is a good model. I hope the Under-Secretary of State for Health and Social Care, the hon. Member for South Ribble (Seema Kennedy), will visit us to have a look at it.
We need to do more. While 92% of our care providers in Somerset are good or outstanding, which is above the national average of 83%, the current spending review needs to acknowledge that the pressures from not only the growing costs of care but being a rural county are different from those in other places. Somerset gets £730 of Government funding per head of population, which is 11% less than the national average. Our school transport gets less money than urban areas, and our public health funding from Government is only £36 a head, compared with £56 nationally. Will the Minister—
(5 years, 5 months ago)
Commons ChamberI should inform the House that neither Lords amendment in the message engages financial privilege. I remind the House that the motions relating to the Lords amendments in the message will be certified as relating exclusively to England and Wales. If the House divides on either of these motions, a double majority will be required for the motion to be passed.
New Clause
Deprivation of liberty: code of practice
I beg to move,
That this House does not insist on its amendment 1 to which the Lords has disagreed, and disagrees with Lords amendment 1B proposed in lieu, but proposes amendment (a) to the Bill in lieu of the Lords amendment.
With this it will be convenient to consider the following:
That this House disagrees with Lords amendment 25A proposed to its amendment 25, but proposes amendments (a) and (b) to its amendment 25 in lieu of the Lords amendment.
We now have an opportunity to deliver reforms that will provide quicker and fuller access to protections for the 125,000 people who are not currently receiving them. That is 125,000 vulnerable people without the legal protection that they deserve, whose families do not have peace of mind, and whose care providers have no legal cover for supporting them. We now have an opportunity to rectify this situation.
In February, the other place considered the 56 amendments made to the Bill by the House of Commons, the vast majority of which were agreed with. However, the Lords tabled alternatives to two of the Commons amendments, and they are the focus of our discussions.
Thank you, Mr Deputy Speaker. It is a particular pleasure to called by you to speak in the Chamber. It is also a pleasure to speak in this debate to reflect briefly on a bit of the background as to why we need this Bill. Some 125,000 people are effectively subjected to this procedure but without the appropriate legal safeguards, so I welcome the fact that both Houses are now looking to support the Bill.
I welcome the Government amendments that have been tabled in lieu of the Lords amendments, and they take on their main thrust and spirit. As I touched on in my intervention on the Minister, it will be interesting to see the timescale for bringing in the code of practice. I accept that it needs to be done properly and be consulted on and that there must be appropriate case studies, but one of the reasons for supporting this Bill is to see that come forward relatively quickly so that there is certainty. Perhaps the Minister will put a letter in the Library that sets out the timescale.
I would not expect to hear a date picked out of the air and stated on the Floor of the House—that would be unreasonable and inappropriate—but it would be useful to get a sense of the timescale, because I assume that we are talking about months, not weeks or years. It would be inappropriate to include specific examples on the face of the Bill, but it is right that the amendments look towards the creation of a clear code of practice and review, providing the opportunity for the House to consider any reviews and hold Ministers to account, because this legislation relates to our most basic right: the right to choose where we live and what we do with our time.
I certainly do. The Minister has responded to the concerns of the hon. Gentleman, myself and others in a spirit of generosity, and perhaps this legislative change does that.
I welcome moves taken to make the definition of deprivation of liberty as strong as possible. What the Government have done is clear. It is vital that the definition links back to the European convention on human rights and provides a sturdy basis to protect vulnerable people. That is good news.
Members have referred to the 125,000 people who are currently deprived of their liberty without the necessary protections in place. Through this legislative change—which will not be opposed; a very helpful attitude has been adopted in the House of Lords and on both sides of this House—can the Minister indicate what will be done to reduce the backlog?
The Government have been lobbied and have consulted the Local Government Association, charitable bodies and other interested people and groups. As a result, we have a vital opportunity for long-awaited reform, and the Bill needs to be passed.
Mr Deputy Speaker, I gave you my commitment that this would be a short contribution, and I intend to keep to that. I want to finish with two quick questions to the Minister. Can she explain how the role of an appropriate person will support and protect vulnerable people in the proposed new system? Secondly, will she confirm that the needs of the supported person and their families will be put first?
Just to help, the Minister would need leave to respond to those questions, so the hon. Gentleman is putting pressure on for something that is not available at the moment.
I would never put pressure on the Minister—not in a million years; I know my place. I suggest gently to her that those two things could be looked at.
(5 years, 5 months ago)
Commons ChamberI beg to move, That this House agrees with Lords amendment 1.
With this it will be convenient to discuss Lords amendments 2, 8 to 10, 18 to 20, 3 to 7 and 11 to 17.
It is a pleasure to be in the Chamber this afternoon. We now have the opportunity to turn our attention to an issue of great importance which, I know, commands the support of the House: the issue of reciprocal healthcare. As Members know, our ability to fund healthcare abroad brings invaluable benefits to people, and it is our responsibility to ensure that we continue to make them available to the public. I thank Members on both sides of the House for their work in considering the Bill so far, including those who have spoken to me about it outside the Chamber.
The amendments deal with the global scope of the Bill. It was intended to provide the Secretary of State with powers to fund healthcare outside the UK, to give effect to healthcare arrangements and healthcare agreements between the United Kingdom and other countries or international organisations—such as the European Union—and to make provision in relation to data processing, which is necessary to underpin these arrangements and agreements. Although it was introduced as a result of the UK’s exit from the EU, it was intended to be forward-facing and not to deal only with EU exit. It offered an opportunity to implement new comprehensive reciprocal healthcare agreements with countries outside the EU.
On a point of order, Mr Deputy Speaker. The Minister and I were in an SI Committee yesterday and you will know how pressurised they are. Four SIs were all blended together, so it was very difficult to separate them and do our job of scrutinising the legislation going through this place, which is our prime responsibility. What we could not get from the Minister was absolute clarity, speaking out to the public and saying that actually the likelihood of keeping EHIC after we leave the EU is on a wing and a prayer—there is no certainty at all.
That is not a point of order, but the hon. Gentleman has certainly clarified what he believes needs to be put on the record.
On a point of order, Mr Deputy Speaker. I like the Minister—he is a nice man—but he is reading a brief that for most of my constituents and his is absolute gobbledegook—brackets, references here and sub-clauses there. Surely his job as a Minister is to tell this House in plain English what the dangers are to their future travel—their holidays and business in Europe?
Let’s calm it down a little. In fairness, I think the Minister needs to get to the end of his speech. We cannot have him being interrupted on points of order; it is not good form in this House to do so. What I would say is, “Who knows?” because I cannot predict what the Minister is going to say. He may well get to the points the hon. Gentleman feels are not being addressed.
On a point of order, Mr Deputy Speaker. As a Back Bencher who is keen to see this debate develop and move on so we can get on to other equally important business, what advice can you give me to stop other hon. Members asking pointless points of order in this debate?
The hon. Gentleman not making another point of order might be helpful as well. Let’s just get on and move forward because it is in everybody’s best interests to hear what the Minister has to say.
Much of what we discuss in this House is clearly of a technical nature, and sometimes its language is impenetrable to others who are watching. However, as the hon. Members for Burnley (Julie Cooper) and for Ellesmere Port and Neston (Justin Madders) will know, the House has had a chance to look at this in a fairly exhaustive way. They will know exactly what I am referring to, and I am sure that they will wish to refer to it in their speeches.
Using “for example” to introduce an illustrative list of things that can be done under a regulation-making power can be found in a number of other pieces of legislation. Section 11(2) of the Automated and Electric Vehicles Act 2018 states:
“Regulations under subsection (1) may, for example”.
Section 48G(2) of the Banking Act 2009 says:
“An order may, for example”.
Using “for example” is not unknown. However, we acknowledge the concerns raised about the breadth of the delegated powers in the Bill, and the Government have taken considerable steps to address those concerns via a number of Government amendments that were accepted in the other place, which I will come to shortly. In addition, we are choosing not to disagree to this amendment, to give further reassurance that the delegated powers in the Bill are no wider than necessary.
(5 years, 5 months ago)
Commons ChamberOrder. Whether the Minister wishes to give way is up to the Minister and we must let him finish his speech.
Indeed, Mr Deputy Speaker; some people just cannot help themselves.
NICE operates two separate programmes for the assessment of new medicines. First, there is a technology appraisal programme through which NICE assesses the vast majority of new medicines. Secondly, as has been said, there is a highly specialised technologies, or HST, programme that is reserved for the evaluation of very high-cost drugs for the treatment of the very small number of patients in England treated in a handful of centres in the NHS. Decisions on whether a medicine should be routed to NICE’s mainstream technology appraisal, or the HST programme are taken through an established topic selection process that includes consideration against published criteria and engagement with a wide range of stakeholders. When NICE recommends a drug for use through either route, NHS organisations are legally required to provide funding so that it is made available to patients.
Today, we have heard concerns that NICE’s technology appraisal programme is not suited to the assessment of medicines for rare diseases, with some calls for individual drugs to be assessed through the HST programme instead. We have also heard calls for a third appraisal route for rare diseases not eligible for the HST programme. I have listened very carefully to all of them and will reflect on them all. There is some sense in a lot of what has been said. Indeed, over the last 20 years, NICE has made positive recommendations in 75% of its appraisals of orphan medicines. By comparison, NICE recommends around 80% of medicines for more common diseases.
I shall give the House two recent examples, because of course we only ever hear about the examples that are stuck or refused. NICE has been able to recommend orphan medicines for neuroblastoma, a cancer of the nerve cells that affects children—this has been widely welcomed—and for primary biliary cirrhosis, a progressive liver disease. Moreover, through its HST programme, NICE has to date been able to recommend a further eight medicines for NHS patients outside of the standard appraisal route. In each case, NICE’s recommendation is subject to a managed access agreement negotiated between the drug company and NHS England.
There will always be cases where NICE is unable to recommend a medicine because the price set by the company does not reflect the benefits that it brings. That is a fact. Hon. Members have of course spoken about the rare diseases of people in their constituencies—they are doing their job—but NICE is an independent body and it should be allowed to develop its guidance free from politicians. The hon. Member for Heywood and Middleton said that that was her initial instinct before she became a politician. That is the foundation of NICE’s reputation as a world leader in its field, and it is in the best interests of patients that it does that.
The hon. Member for Blaydon, in introducing the debate, raised concerns about Kuvan, the treatment for phenylketonuria. NICE has initiated an appraisal of Kuvan, and officials from NICE, NHS England and our Department have been reconsidering the appropriate assessment route in the light of the new available information that the hon. Lady mentioned. Riley is right: we have to make this fair. I am told that a final decision will be taken promptly—I urge that again from the Dispatch Box today—and with the minimum impact on the timescale for NICE’s assessment.
The hon. Members for Strangford, for Bristol East and for Dudley North have all spoken about the issue of Orkambi so many times and so well. It is incredibly frustrating and disappointing to Ministers, just as it is to them and everyone else, that Orkambi is not available to NHS patients in England at the moment. I understand and share that frustration. This is why my right hon. Friend the Secretary of State held a meeting with Vertex, NHS England and NICE a couple of weeks ago. I was at that meeting, at which the parties again discussed how best to reach a conclusion. I am pleased to say that they are meeting again today to continue the discussions and decide on the next steps. Decisions about the availability of drugs in Scotland are of course a devolved matter, and that is up to Scotland. I understand that no decision has been taken on routine funding for NHS patients in Scotland, but the hon. Member for Motherwell and Wishaw asked me to look again at the Scottish system. I will do that and I will ask the Minister responsible for this policy area to do so.
The hon. Member for North Tyneside and others raised the issue of the drug Spinraza for the treatment of spinal muscular atrophy. I understand that NICE’s independent appraisal committee met earlier this month to consider its recommendation on Spinraza following new evidence being put forward by the company. NICE wrote to the company and patient groups last week to say that it was not yet able to provide an update on the outcome of the meeting, but that it would provide an update soon. Again, I encourage that to happen even sooner. I recognise that the protracted process in this instance is hugely frustrating for patients and their families and, whatever our differences across the Dispatch Box, of course I feel the deep hurt that the hon. Ladies who spoke on the subject have laid out. I hope they will appreciate that a final decision has not yet been made and that NICE must be allowed to complete its work free from political interference.
I do not have time to go into a huge amount of detail. I have been asked lots of questions during the debate, but I have little more time than the people who have spoken today. I thank Members for speaking so passionately and I hope that they will welcome the forthcoming review of NICE’s methods and processes over the course of this year for both its technology appraisal and its highly specialised technologies programme, which is at least partly what today’s motion calls for. It would not be appropriate to pre-empt the review by commenting in detail on what it should look at, but I will ensure that it is directed towards the motion before us today and to the transcript of today’s deliberations. I now want to give time to the hon. Member for Blaydon, who introduced the debate, to close it in the time that we have left.
(5 years, 5 months ago)
Commons ChamberI am pleased that the debate is taking place in the main Chamber. We had a very moving debate some months ago in Westminster Hall, but this is such an important issue that it needed to be raised here. Unfortunately I shall have to leave soon. The debate was meant to start about an hour ago, according to my diary. I am so sorry not to be able to stay, but I am so pleased that the hon. Gentleman is raising the issue now.
Order. I do not know who told the hon. Lady that the debate would start at that time. Someone must have misled her, because there was no set time for it to start.
In that case, Mr Deputy Speaker, I apologise.
My local authorities have some excellent care providers and support services, including Parent Carers Voice. Does the hon. Gentleman agree that services for children with autism should be financed through council budgets rather than the responsibility being pushed on to struggling families?
Order. Many Members wish to speak, so there must now be a six-minute limit. I would also like to say that our thoughts are with Dame Cheryl, and she has been missed today but she has certainly been well represented.
(5 years, 6 months ago)
Commons ChamberI beg to move amendment 1, page 5, line 10, at end insert—
“(3A) Before making any regulations under subsection (3)(b), the Secretary of State must lay before Parliament a report on—
(a) the likely effects of the provisions of this Act on persons undergoing rehabilitation for brain injuries, and
(b) the interaction between the provisions of this Act and the processes for prescribing for brain injury rehabilitation therapy.”
With this it will be convenient to discuss the following:
Government amendments 5 to 32.
Amendment 2, in schedule 1, page 15, line 24, at end insert—
“(d) the effects of any treatment undergone by the cared-for person, including prescription brain injury rehabilitation therapy.”
Government amendments 33 to 37.
Amendment 49, page 16, line, leave out from “out” to the end of line 16, and insert
“by the responsible body.”
This amendment would require the responsible body to carry out the consultation in all cases.
Government amendment 38.
Amendment 50, page 17, line 13, at end insert—
“(ca) the arrangements are being authorised under paragraph 16 of this Schedule, or”
This amendment would require an AMCP to review all cases where the responsible body is authorising arrangements based on a statement provided by a care home manager.
Government amendment 39.
Amendment 48, page 18, line 21, at end insert—
“Authorisation charges
24A No charges may be made in relation to the steps taken in determining whether the responsible body may authorise the arrangements for the cared-for person.”
Amendment 3, page 18, line 35, at end insert “or
(c) at the end of a period of prescription brain injury rehabilitation therapy undergone by the cared-for person.”
Amendment 4, page 20, line 4, after “met” insert
“taking into account any treatment to be undergone by the cared-for person, including prescription brain injury rehabilitation therapy.”
Government amendments 40 to 46.
Amendment 51, page 23, line 1, leave out paragraphs 39 and 40 and insert—
“39 (1) The responsible body must appoint an IMCA to represent and support the cared-for person if–
(a) one or more of sub-paragraphs (2), (3), (4) or (5) applies, and
(b) sub-paragraph (6) does not apply.
(2) The cared-for person makes a request to the responsible body for an IMCA to be appointed.
(3) The responsible body has not identified an ‘appropriate person’ to support and represent the cared-for person in matters connected with the authorisation.
(4) The responsible body has identified an ‘appropriate person’ to support and represent the cared for person in matters connected with the authorisation, and they have made a request to the responsible body for an IMCA to be appointed.
(5) The responsible body has reason to believe one or more of the following—
(a) that, without the help of an IMCA, the cared-for person and any appropriate person supporting and representing them would be unable to understand or exercise one or more of the relevant rights;
(b) that the cared-for person and any appropriate person supporting and representing them have each failed to exercise a relevant right when it would have been reasonable to exercise it;
(c) that the cared for person and any appropriate person supporting and representing them are each unlikely to exercise a relevant right when it would be reasonable to exercise it.
(6) The cared-for person objects to being represented and supported by an IMCA.
(7) A person is not to be regarded as an ‘appropriate person’ to represent and support the cared-for person in matters connected with this schedule unless—
(a) they consent to representing and supporting the cared-for person,
(b) they are not engaged in providing care or treatment for the cared-for person in a professional capacity,
(c) where the cared-for person is able to express a view about who they would like to represent and support them, the cared-for person agree to being represented and supported by that person,
(d) where the cared-for person is unable to express a view about who they would like to represent and support them, the responsible body has no reason to believe that the cared-for person would object to being represented and supported by that person,
(e) they are both willing and able to assist the cared-for person in understanding and exercising the relevant rights under this Schedule, including with the support of an IMCA if appropriate.
(8) The ‘relevant rights’ under this schedule include rights to request a review under Part III of this Schedule, and the right to make an application to the court to exercise its jurisdiction under section 21ZA of this Act.”
This amendment would broaden the provision of advocacy, ensuring that advocates are provided as a default unless the cared-for person does not want one.
Government amendment 47.
I will speak to amendment 1 and the three other amendments in my name and the names of several colleagues.
I want to start with enormous praise for the national health service, which in many cases makes the key decisions on everything that we will talk about today. Sometimes those are very difficult decisions, including for families, and they need to be managed with care and sensitivity. Ensuring that we have the right law in place to enable clinicians to make the right decisions is vital. I was on the Public Bill Committee for the Mental Health Act 2007 under the Labour Government, and I remember many of the rows and difficulties then. Ensuring that legislation fits the complicated circumstances of real life is not all that easy, and in particular, the definition of what might be proper treatment is not readily come by.
Often lobbyists get a really bad press. My experience of lobbyists in this field is entirely positive, including those working for the pharmaceutical industry, who do an amazing job in providing new drugs that can save people’s lives and manage their conditions much better, and the many charities in this field. When lobbyists are decried, I sometimes want to point out that they play an important part in ensuring that Members of Parliament know exactly what they are doing when it comes to legislation.
All the amendments that I have tabled relate to acquired brain injury. I am aware that several other colleagues who are members of the all-party parliamentary group on acquired brain injury are here today. I do not want to make an apology for that, but I want to explain why I have tabled these amendments. It is partly because I believe that acquired brain injury, though recognised and understood by some, is something of a hidden epidemic in Britain.
Something like 1.4 million people in this country are living with an acquired brain injury. A new person presents at accident and emergency with a brain injury every 90 seconds. Many of these injuries have lasting effects that are completely invisible to an ordinary member of the public. For instance, the person standing in front of us in a queue who is being difficult might look as if they are drunk or just being difficult, but they may have a brain injury. We would have no idea, and the person feels trapped and finds the situation as difficult as we do. The more we come to an understanding of acquired brain injury in this country, the better.
There are many different causes of brain injury, including road traffic accidents, accidents about the home and stroke. One cause that has been brought home to me recently is carbon monoxide poisoning. Not only the high level of carbon monoxide poisoning that follows an incident, but a sustained low level of carbon monoxide due to poor central heating systems or facilities or something like a Calor gas burner in a home, can end up causing a long-term brain injury. This particularly affects some of those who live in the worst housing in the land, and who are the poorest and least able to afford, for instance, to have their boiler mended or assessed every year.
My hon. Friend makes a very good point. One of the things about rugby league and about rugby union, which I know rather better, being from south Wales—[Interruption.] I do not think it is parliamentary to tut-tut from the Chair, Mr Deputy Speaker, if you don’t mind my saying so. The truth is that many of the players today are bigger, stronger and faster, so the impacts may be much more significant than they were in the past. Curiously, when we watch some of the commentary on Twitter and Facebook about matches, we see a kind of rejoicing in the physical pain that people are going through, and I think we really need to roll that back. We need to roll that back so that we are actually caring about the players. Quite often the players themselves will be desperate to go back on. It should not be the player who makes that decision; it should be an independent doctor who makes it. [Interruption.] I think you want to intervene on me, Mr Deputy Speaker.
The tut-tut was to say that the hon. Gentleman would benefit from knowing both types of rugby. The only thing I would add, just to help his case, is that in rugby league a player is taken off for a full assessment by a doctor and not allowed back on. That is the benefit on which rugby league is leading the sport.
I am glad I took that intervention. It is unusual to get an intervention from the Chair, but I think we welcome this new style of chairing.
I am tempted to make a point of order! No—you are absolutely right, Mr Deputy Speaker.
The key thing is to have the same protocols for all sports, so that there is the same protection. A child might play rugby league one year and rugby union the next; if there are different protocols, that will undermine the whole system. Incidentally, the point also applies to a whole range of other sports—hockey and ice hockey, as well as American football, in which there is growing interest in the United Kingdom. We should not let the issue be led by litigation, which is what has happened in the United States of America: we should let it be led by the medical science, which is rapidly changing.
A lot of people want to speak, but we have to finish at 6 o’clock, so we only have 90 minutes.
The opening two speeches have taken 55 minutes, and we have to finish at 6 pm. I recognise that a lot of other people want to speak, and I certainly do not want to put pressure on the Opposition spokesperson, who also wants to make a speech. When other people come in, please remember that we want to get through everybody.
We should not be in this position of having less than two hours on Report. This Bill has been rushed. We were in the same position on Second Reading, and it is absolutely unacceptable for such an important Bill to be rushed through as it has been today. I spoke to the Minister about this yesterday. She could have chosen to bring the Bill back on a different day, and I am sorry that she has not.
I am every bit as concerned about this Bill as I was on Second Reading. It remains deeply flawed. It weakens the current safeguards for people who lack capacity, and we have not even had a clear answer to the question that the hon. Member for Totnes (Dr Wollaston) just asked about the current backlog of DoLS applications. It is not clear how that will be cleared.
The Minister said at the start of Committee that she would work constructively with other parties on this Bill, but that has not been reflected in our experience. She has dismissed many of the serious concerns raised both by Opposition Members and by the many charities and representative groups outside the House with an interest in the Bill.
I said in Committee that our amendments were the bare minimum required to ensure that the Bill is fit for purpose. The Government rejected all our amendments in Committee, and, despite some movement on one or two issues since, the Bill retains the majority of the significant flaws it contained on Second Reading. It is sad that, having been through all the stages, this is where we are.
We have tabled further amendments to address some of the glaring holes that remain in the Bill, and I thank all the stakeholders who have helped us, including the Alzheimer’s Society, VoiceAbility, Mencap and Lucy Series. Without these amendments, we simply do not believe that the Bill is fit for purpose, and we oppose it progressing further.
(5 years, 6 months ago)
Commons ChamberOrder. May I just read out the deferred Division result?
Absolutely.
I have now to announce the result of today’s deferred Division. In respect of the question relating to long- term investment funds, the Ayes were 302 and the Noes were 262, so the Ayes have it.
[The Division list is published at the end of today’s debates.]
I must inform the House that there were errors in calculating the number of votes of Members for English and Welsh constituencies and for English constituencies in Divisions yesterday on the police grant and the local government finance report. On the police grant, the figures for the England and Wales-only vote should not have been announced as 289 for the Ayes and 242 for the Noes; they should have been announced as— Ayes 289 and Noes 244. On the local government finance report, the figures for the England-only vote should not have been announced as 270 for the Ayes and 208 for the Noes; they should have been announced as— Ayes 270 and Noes 206. The results are unaffected.
A restless nation will sit easier in their armchairs knowing that, and we are grateful to you, Mr Deputy Speaker, for your public service announcement.
To respond to the intervention from the right hon. Member for Alyn and Deeside (Mark Tami), I think he is absolutely right that we—not just Ministers, but health practitioners and all of us in our communities—need to stress again and again the widening range of treatments, the recovery rates and the extra lifespan one can have after early diagnosis and treatment. I suppose it is a perfectly legitimate historical response to have to such a diagnosis, but we need to end once and for all people saying, “Well, that’s it. I’ve had my chips.” To say, “You know, let’s see what we can do with the rest of it”, and in effect give up, is absolutely the worst thing that one could do.
May I raise the subject of diagnosis with the Minister? To pause there, I am not saying this to ingratiate myself with my hon. Friend, but the understanding and sensitivity that he brings to these issues and, indeed, to his wider portfolio commands respect across the House. I think we are very lucky to have him, and I am particularly pleased that my hon. Friend is the Minister replying to this debate.
(5 years, 7 months ago)
Commons ChamberI call Carol Monaghan to move the motion. She has up to 15 minutes. Given that so many Members wish to speak, I shall be very grateful if they do all that they can to help each other.
Order. If each hon. Member can stick to four minutes, we will get everyone in, and everyone will get equal time.