Oral Answers to Questions

Seema Malhotra Excerpts

Tuesday 13th April 2021 Commons Chamber

[Jo Churchill]

Yes. As I explained in my earlier answer, one of the challenges is that there is not a consistent way of capturing the data. We need to sort that out: we need to make it simple; we need to make people understand what data we are collecting; and we need to make sure that, for both breast cancer patients and all metastatic cancer patients, we know where they are and that we are helping them with this disease as effectively as we can.

[Seema Malhotra (Feltham and Heston) (Lab/Co-op)]

What assessment he has made of the effect of the covid-19 outbreak on bereavement services.

[The Minister for Patient Safety, Suicide Prevention and Mental Health (Ms Nadine Dorries)]

The Government recognise that the effects of covid-19 have increased the demand for bereavement services and highlighted the complexity of grief that these services support. In response, since March 2020, we have given more than £10.2 million to support mental health charities, including bereavement services, to support adults and children struggling with mental wellbeing due to the impact of covid-19.

[Seema Malhotra]

Last year, along with the Co-operative party, I called for a proper plan for bereavement to ensure that everyone who has experienced loss during this difficult period has the support that they need. Awareness of the services available is vital if people are to get this help. The Good Grief Trust, with which I have been in contact, has said that too many people simply do not know where to turn. What steps is the Minister taking to help signpost families to bereavement charities and support and to increase awareness of the support available to families in need, which also includes support that can be signposted from hospitals when loved ones die?

Covid-19

Seema Malhotra Excerpts

Monday 16th March 2020 Commons Chamber

[Matt Hancock]

We address that in the advice, and this is a very important point. We have taken advice on how to respond to the crisis, including from our ethics committee, which includes representatives of the major religious faiths. It is true that we include religious groups in our advice about social contact. We have seen from elsewhere in the world how sometimes it is through religious gatherings that the virus can spread so, with the deepest regret and the heaviest of heart, we include faith groups and gatherings of faith within the advice.

[Seema Malhotra (Feltham and Heston) (Lab/Co-op)]

Will the Secretary of State and the Chancellor at the very least write to all Members this week to set out the measures that they understand will be taken to support the self-employed and small businesses in our constituencies? That information is vital. May I also ask him about local authorities? They will be on the frontline of supporting families facing hardship, as well as ensuring that services reach those in need. It will be a mammoth effort, undertaken at the same time as employees will have to be encouraged to work at home. What financial support, including hardship funds, are the Government providing to cash-strapped local authorities and how, alongside the enormous effort provided by community organisations, will the Secretary of State ensure the safeguarding of older people?

[Matt Hancock]

These are all important considerations. The financial ones are of course a question for the Treasury, which is looking at how to address all these things.

Coronavirus

Seema Malhotra Excerpts

Monday 9th March 2020 Commons Chamber

[Matt Hancock]

We absolutely are, not only in terms of any measures that we take and how they might have to be amended for key workers, but also because, critically, when it comes to school closures, one reason why closing schools is not a cost-free option is that it takes away some of the very staff whom we need to be able to respond to the crisis.

[Seema Malhotra (Feltham and Heston) (Lab/Co-op)]

I have been approached by some parents who want to know what option they may have to withdraw their children from school for a short period, perhaps prior to the Easter break, if they wish to do so, and agree with the school an arrangement for a period of home study. Is the Secretary of State working with his Department for Education counterparts on any contingency plan should home schooling become necessary?

[Matt Hancock]

The most important thing is to follow the advice from Public Health England. We now have in place well-established routes to ensure that all headteachers get the appropriate advice. Ultimately, it is headteachers who are currently responsible for such decisions.

NHS Funding Bill

Seema Malhotra Excerpts

2nd reading & 2nd reading: House of Commons
Monday 27th January 2020 Commons Chamber

[Matt Hancock]

We are using all possible means to get in contact with the 1,460 people whom we need to contact, and who we know have travelled to the UK from Wuhan and who have not as far as we know left the country. We are collaborating with Border Force, the airline and others, including universities, schools and cultural organisations to try to make contact.

[Seema Malhotra (Feltham and Heston) (Lab/Co-op)]

My constituency borders Heathrow, and many of my constituents will be working at Heathrow with the airlines and in many other roles. I appreciate that the risk may be low, but could the Secretary of State update the House on whether advice has been given to Heathrow and airlines on how to give advice to their staff who may have come into contact with people who might be affected so that everybody can be assured that all is being done and that any support they may need is available?

[Matt Hancock]

The hon. Member is quite right to raise this. There is a Public Health England unit or hub at Heathrow to meet all flights from China now; it met the one flight that has come from Wuhan directly since news of this outbreak reached the level it did last Wednesday. The advice is clear to anybody who is worried about having coronavirus, and that is to call 111. If they have travelled to Wuhan or elsewhere in China recently, they should declare that to the 111 service when they call, and the 111 service has the full advice available. It is important for them to call 111 or to call their GP rather than going to a GP or to A&E, for exactly the reason that we want people to self-isolate if they have been to the region or if they think that they may have the virus.

I will now move on to the Bill. As we have been highlighting with the NHS work on the coronavirus that originated in Wuhan, few things in life are certain. However, it is the job of Government to plan for the future, even though we cannot fully see it. We do not know for instance exactly how many babies will be born in four years’ time, but we can anticipate demand for maternity services. We do not know exactly how many people will make a 999 call in four years’ time, but we can and must plan for that. Indeed, we do not know if the Labour party will have a competent leader in four months’ time, let alone four years’ time, but I hope for the country’s sake to see the hon. Member for Leicester South (Jonathan Ashworth) on the Opposition Front Bench well into the next decade. There is one institution that, with this Bill, knows it will get the funding it needs in 2024, and that is the NHS, because this Bill injects the largest and longest cash settlement ever granted to the NHS and will enshrine it into law—£33.9 billion extra a year by 2024.

--- Later in debate ---

[Jonathan Ashworth]

My hon. Friend is absolutely right. Of course, we are short of 44,000 nurses across the whole national health service. One of the most damaging policy decisions that George Osborne made—probably another of the Secretary of State’s ideas—was to cut nurse training places in 2011 and get rid of the training bursary. The Government say that they will bring back a grant, but they are not going to go the whole hog, are they? They are not going to get rid of tuition fees. They still expect people to train to be nurses and build up huge debts, because the nature of the training that they have to go through means that they will not be able to take a job on the side. I do not believe that is the way we should recruit nurses for the future; we should bring back the whole bursary for nurses, midwives and allied health professionals.

[Seema Malhotra (Feltham and Heston) (Lab/Co-op)]

My hon. Friend is making an important speech and has just made reference to the cuts to capital budgets. Does he agree that it is staggering that since 2014 we have seen five consecutive switches from capital budgets to revenue budgets, totalling about £4.29 billion? The consequences are now being felt by all our constituents throughout the country.

[Jonathan Ashworth]

My hon. Friend is absolutely right. Because of the austerity that the Government have imposed on the NHS, its leaders—trust bosses and clinical commissioning group bosses—have had to raid capital budgets repeatedly and transfer from capital to revenue, as my hon. Friend said. These sorts of smash-and-grab raids, which have happened five times, have taken around £5 billion out of the capital budgets, which is why so many of our hospitals now have this huge £6.6 billion-worth of repair backlog, with sewage pipes bursting and roofs falling in.

It is all very well for the Secretary of State to stand there and talk about 40 new hospitals, even though he has not outlined a multi-year capital settlement at all. He just went around the country telling Tory candidates, who have now become MPs—congratulations to them—that he will build a hospital here and they will have a new hospital there. I lost count of the number of times that he committed to new A&E departments and new hospitals that were not on any list that he has published in the House of Commons. We do not actually have a multi-year capital plan to deal with the more than £6.5 billion backlog that faces our hospitals. This is not a serious way to make policy for the national health service. Our trusts’ chief executives need certainty on capital, which is why we need to see the multibillion-pound capital plan. We do not even know whether we are going to get one in the Budget. We do not know when it is coming: the Secretary of State has given us no detail or clarity on that whatsoever.

Whether it is waiting for pre-planned surgery, for cancer treatment, for test results, in A&E or on trolleys, thousands of our constituents wait longer and longer in pain, agony and distress, thanks to years of austerity that the Secretary of State designed. As George Osborne’s right-hand man and chief bag carrier, he designed the years of austerity and is now asking the House to endorse the continued underfunding of the NHS.

--- Later in debate ---

[Seema Malhotra (Feltham and Heston) (Lab/Co-op)]

It is an honour and pleasure to follow the hon. Member for Darlington (Peter Gibson), and to be the first to congratulate him on his excellent maiden speech. It was a delight to hear about his life and experience in the constituency, and also to hear his very generous tribute to the very highly regarded and excellent Jenny Chapman, as well as about his other predecessors. He made a very passionate speech, highlighting the issues of transport, the economy, education and health. I am sure the way he did it—with such confidence and such style, and with humour—will have been heard by his constituents. I wish him great success in his work in this House.

At the outset, I want to thank the British Medical Association, Mind, NHS Providers and others that have sent briefings for this very important debate.

It is a very small Bill—two clauses on five pages—which will put into legislation the current long-term funding settlement for the NHS, as set out 12 months ago. It sets a minimum that must be paid to the NHS for revenue spending in each year until 2023-24, when the provisions will cease to have effect. One might note that that is also likely to be the next election year. It came as a slight surprise to me that the Bill was drafted in this way. If spending needs to be locked in by legislation, it is almost as if the Government are seeking to prevent future Conservative Chancellors in this Government from making cuts to the NHS budget. That is a novel approach for a Prime Minister when the Government, as the House of Commons Library has noted, already have control over their own spending.

I want to focus on two areas that go beyond the Bill specifically and into the Government’s strategy for funding and the NHS. The first is capital funding, and the urgent support that is needed in my constituency to get the rebuild of the Heston health centre back on track. The second is community health services and social care, and the specific issue of neurocognitive rehabilitation services.

It is a matter of great concern for the medium and long-term health of our NHS that the NHS capital budget, which invests in our buildings, beds, equipment and IT, is today lower in real terms than it was in 2010-11. That has already been mentioned; indeed, we have had five consecutive switches from the capital budget to the revenue budget for the day-to-day running of the NHS since 2014 totalling over £4 billion. The consequence is that buildings and equipment are being left outdated, affecting increasingly the quality of patient care and the reliability of appointments. Poor buildings and equipment also have a knock-on effect on the morale, recruitment and retention of key NHS staff. The Minister has intimated that there will be additional funding for infrastructure, but we await further details.

I want to raise the important issue of the Heston health centre, because my constituents will not be the only ones to have been affected by changes in Government policy over the last few years. At the end of August I wrote to the Health Secretary and NHS England about Heston health centre when my local CCG contacted me. Among all London CCGs, Hounslow has the fourth highest number of patients per permanent qualified GP, while the amount of funding per registered patient is 7% below the London average and 12% below the England average.

The chair of Hounslow CCG has described the current Heston health centre as unsuitable to deliver 21st-century primary care. The buildings date from the 1970s, are in need of major repair and are no longer compliant with disability legislation. The proposed new development is desperately needed to provide patients with the quality of care they deserve, offering four GP services in one and providing disabled access as well as a more attractive place for GPs.

Hounslow CCG has been working on this development since 2014. In 2015 the project was the subject of a discussion between the Department of Health, Community Health Partnerships and NHS Property Services, at which the CCG, the LIFTCo and NHS England were all represented. At that meeting it was concluded that CHP would work with the West London Health Partnership, the LIFTCo, to take forward the project as a public-private partnership funded scheme. The problem, however, is that after that decision funding was cut and the CCG was informed in June 2014 that, following the Chancellor’s commitment in 2018, new off-balance PPP-funded infrastructure projects would not be taken forward.

I was fortunate to be able to raise this issue with the Chancellor in September, and I am grateful for his offer of having officials meet me. However, having originally been given the green light to go ahead—the project was identified by the Department of Health as the best value funding option—currently we are in limbo: we do not know how the project is going to go forward and there is no clear sense of direction for my CCG and therefore my constituents. I would be grateful if the Minister could still agree to a meeting with me so that direction can be given for a project that is desperately needed.

As we have also heard in this debate, NHS providers and others have also highlighted how funding is to be allocated under the Bill and what will be further funded. I make reference here to community healthcare and social care, particularly in relation to the urgently needed increase in public health budgets following an almost £1 billion reduction in real terms under this Government. I want to raise not just the issue of prevention but recovery from illness and make particular reference to post-stroke and brain-damage related services. Neurocognitive rehabilitation is a particularly underfunded service.

Too often we respond to brain damage as a result of illness or even early dementia with slow diagnosis and medication, when research suggests that better and more structured brain activity could help improve memory, planning skills and basic safety in performing day-to-day tasks that we currently take for granted. We are grappling with this in Hounslow, and I am grappling with it with my own mother, who had a stroke two years ago. At the weekend I was very moved when a constituent came to me and said, “What can I do, because I feel like I am starting to lose my memory, but there are no services available to help me? My daughter has said it is just part of getting old.” We must see whether more can be done not just in prevention but to help through these important services with rehabilitation for all our constituents.

Today’s debate is important; it goes beyond whether the Bill is actually needed into how the Government are going to be spending our collective resources on the NHS, because going forward we need a plan which funds the NHS properly and provides a comprehensive strategy, addressing all our sectors. I look forward to meeting officials about the Heston health centre, and to working with the Government on how we can ensure that the other essential services we need are delivered.

[Several hon. Members rose—]

The National Health Service

Seema Malhotra Excerpts

Wednesday 23rd October 2019 Commons Chamber

[Mr Deputy Speaker]

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.

[Seema Malhotra (Feltham and Heston) (Lab/Co-op)]

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—

[Mr Deputy Speaker]

Order. I have been down that road already, and I am not going to change what I have said.

Maraviroc and Progressive Multifocal Leukoencephalopathy

Seema Malhotra Excerpts

Monday 30th September 2019 Commons Chamber

[Seema Malhotra (Feltham and Heston) (Lab/Co-op)]

I am glad to be able to discuss an issue that I have been working on closely with my constituent, Ms Amarjit Rai. This is an urgent matter and I believe it is important to put this issue on public record and to seek greater flexibility in NHS policy on the commissioning of the drug Maraviroc to treat Natalizumab-induced progressive multifocal leukoencephalopathy, and in NHS England’s approach to individual funding requests. I thank Amarjit, her advocate, Kartik, her consultants and Mary Jo Bishop and Neha Soni in my office, as well as the House of Commons Library, for their assistance with this debate.

In my work on this case, I have been struck by parallels with the campaigns by the late Dame Tessa Jowell on the more experimental use of drugs for very rare conditions, for which there will never be the sample sizes in one country, or potentially across the world, for a full clinical trial, but for which the anecdotal evidence is positive and the patient voice should be heard. Some of my contribution today will be slightly technical, but I hope it will be clear.

Ms Rai was sadly diagnosed with multiple sclerosis in 2013 aged 34. She was prescribed Natalizumab, but sadly as a consequence she contracted PML, a highly rare and often fatal viral disease that affects only a handful of people across the UK. She has since been rendered disabled with no functional use of her right arm. She has other debilitating effects. PML affects the brain by damaging the nerves. The symptoms include muscle weakness, visual disturbance, impaired speech and cognitive difficulty.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Lady for bringing this matter to the House. Does she agree that the treatment of this often fatal viral infection of the brain must be focused on survival rates and that, given that survival rates are better with Maraviroc, it must be available where clinically determined? If it is key to making lives better and halting this disease, we must do everything we can to make it available.

[Seema Malhotra]

The 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.

[Mr Deputy Speaker (Sir Lindsay Hoyle)]

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.

[The Parliamentary Under-Secretary of State for Health and Social Care (Jo Churchill)]

I thank the hon. Member for Feltham and Heston (Seema Malhotra) for raising this matter in the House, and for the comprehensive and sensitive way in which she has set out problems that will certainly be well recognised by many patients—not only her constituent, but people throughout the rare disease community. A number of the issues that she has raised affect what are often very small cohorts trying to put their case for particular drugs.

As we have heard from the hon. Lady, progressive multifocal leukoencephalopathy is a terrible disease which can have devastating effects on patients whose immune systems are already impaired, often as a result of taking medicines. Maraviroc is an antiretroviral drug approved by the Medicines and Healthcare Products Regulatory Agency for the treatment of HIV. In this case, the hon. Lady’s constituent, who unfortunately has multiple sclerosis, has been paying privately for the drug, which I understand she feels has a positive effect on her condition.

The use of Maraviroc for people with MS is “off-label”. Medicines sold and supplied in the UK must, rightly, have a licence, which specifies the medical conditions that they are approved to treat, and also specifies the recommended doses, contra-indications, and special warnings as specified by the MHRA. All that is intended to ensure the safety of the patient. Off-label use, as I am sure the hon. Lady is aware, describes that situation where the licensed medicine is used for an indication other than that for which it is licensed originally. However, as she said, a decision to use a medicine off-label is one for the individual clinician. In each case, it is for that professional to make that decision if they think the treatment is appropriate for a patient and they are satisfied that there is robust evidence to support their prescribing decision.

As the drug in question is a licensed medicine for the treatment of HIV, not PML, it has not been fully tested with PML patients in clinical trials. Therefore, it has not been approved as safe and effective. Crucially, it is important to note that the use of this drug to treat Natalizumab-induced PML currently has an evidence base limited to small observational studies where no conclusive evidence of patient benefit was found. However, I fully appreciate that it is a real challenge to establish a clinical evidence base when the patient population is so small.

In fact, as the hon. Lady mentioned, NHS England and NHS Improvement were asked in 2018 to develop a commissioning policy on the use of Maraviroc for the treatment of Natalizumab-induced PML. They concluded, however, that there was insufficient evidence of benefit and advised against routine commissioning. Maraviroc is not currently appraised or recommended by national bodies for the treatment of PML, because there is a lack of evidence of effectiveness and a lack of any evidence-based clinical support in the treatment of PML. NHS England has therefore concluded that there is not sufficient evidence to support the routine commissioning of the drug—a conclusion that clinical commissioning groups are minded to follow. Of course, that position would be reviewed should further evidence become available.

Despite Maraviroc not being routinely commissioned by the NHS, it remains possible for patients to access the drug through the individual funding request, which, as the hon. Lady has said, her constituent did. An independent panel would have considered the circumstances of the request before making a decision. In this case I understand that the IFR was rejected, which I know would have been upsetting for the hon. Lady’s constituent. Following the outcome of the IFR, the reasons for the decision would, I am sure, have been explained to her constituent. If not, I urge the hon. Lady to ensure that they are explained in full.

[Seema Malhotra]

I understand that this is a technical matter in some respects, but I am a little surprised that I have not heard the Minister say anything new compared with the responses I have received to parliamentary questions. I have laid out the evidence and shown that there are nuances. In the case of my constituent, the medical benefits have been clear. I am surprised that the IFR was denied, including subsequently on appeal, and, given that I have laid out the evidence, that the Minister is not in a position to give advice on how we can move forward so that we do not keep going around in circles.

[Jo Churchill]

I think that part of the confusion has come from the fact that the NHSE advice not to commission is different from the independent funding route process. Clinicians can always apply for IFR funding in exceptional circumstances. The MHRA parliamentary question was about availability. One offer I can make is that we will try to unpick those four answers and to understand a little more in the round how we can be of assistance and give the hon. Lady’s constituent clarity, if nothing else.

[Seema Malhotra]

The Minister is very generous in giving way. Rather than restating the policy, will she support the request for the medical advice that was the reason for the treatment and funding being refused? There must have been some medical input into the decision made by the panel at NHS England. Will she also be able to meet me to review the process and what my constituent has been through? Clearly my constituent is in a very rare circumstance—she is possibly one of fewer than 10 people in the country—but surely we are able to work a bit faster and with more agility in a situation where, in a sense, the patient and the experts in the field should be leading.

[Jo Churchill]

I am, of course, happy to meet the hon. Lady, but we must be led by clinicians. As she says, her constituent has been supported by her clinicians, and it is up to them to make clinical judgments and to put the case for the best course of treatment in each particular case. The first thing to do is to seek clarification on where we know we are going, and hopefully we can move forward from there.

As the hon. Lady says, the PML group is around 10 in number, so getting robust evidence is obviously a challenge—that is all part and parcel of the issue. As she knows, another challenge is that the Department of Health and Social Care does not have direct responsibility for what is routinely commissioned. Instead, it is the responsibility of NHS England, NHS Improvement and the CCGs. Faced with an unprecedented level of demand for services, all those involved have to make difficult decisions about commissioning cost-effective care on a daily basis. They make those decisions based on patient need and clinical evidence, which I acknowledge can feel very cyclical for the rare disease community.

[Seema Malhotra]

Does the Minister agree it is slightly more problematic in this case, because the cost of Maraviroc is arguably a bit less than the MRI scans and the steroids every month that the NHS would otherwise prescribe or suggest to my constituent? The negative health impact of that treatment should also be taken into account.

[Jo Churchill]

I thank the hon. Lady, but I return to the fact that it is a judgment for clinicians to make; it is not one for me to make at the Dispatch Box.

My colleague Baroness Blackwood rightly said this summer that we need a national conversation on rare diseases to identify the big areas on which we need to focus so that we can offer the best possible care for rare disease patients and their families, who are often affected by what their loved ones are going through. I could not agree more so, starting this autumn, we will be engaging with patients, researchers and clinicians to gather evidence and identify the major challenges faced in this field.

[Jo Churchill]

I am not in a position to say. Although each cohort is small, the overall rare disease community is large. That is why such debates make an important contribution to the broader conversation. I am grateful for how they raise awareness of the rare disease community, which comprises some 3.5 million people in this country.

[Seema Malhotra]

I will make this my last intervention. I just want to welcome the work that will be done in respect of the rare disease community. May I add to the comments in this House in welcoming the Minister to her place? I know that her experience will be extremely valuable in the work that she does in the Department.

[Jo Churchill]

I thank the hon. Lady sincerely for that and for speaking so passionately here today about the situation on behalf of her constituent. I know that her constituent may not feel that this is the answer that she wanted, but I cannot emphasise enough the positive effect of bringing this issue to the Chamber. Not only will it raise awareness, to help inform Government strategy, but it will support others in the rare disease community. As the hon. Lady said, allowing their voice to be heard is what is important here.

Question put and agreed to.

Services for People with Autism

Seema Malhotra Excerpts

Thursday 21st March 2019 Commons Chamber

[Huw Merriman]

The hon. Gentleman is absolutely right. Time and again we see that young people have to fail before they can be given the support they need. There are many examples of young people clearly failing when they go to a pre-school, but then they still have to move on to a mainstream school, where they will fail, before they can be given support. It should be blindingly obvious, and councils should look at those plans before children have to start primary school. Often councils say that they are not required to do that, but perhaps they do not know what their obligations really are.

[Seema Malhotra (Feltham and Heston) (Lab/Co-op)]

The hon. Gentleman is indeed making an excellent speech. He also referred to parents. What is his view of the extent to which the needs of parents and family members should also be part of the strategy, not least because sometimes they do not understand the experience of their children and how best they can help? Family members also needs respite provision, for example, because of the demands of caring for children with autism. We should also recognise the amazing work that many specialist schools are doing to ensure that children with autism, who also have amazing talents, can express and develop their abilities.

[Huw Merriman]

The hon. Lady is absolutely right. A couple of years ago I was very proud to co-author the “Autism and education” report, which she also worked on. It showed many worrying statistics. For example, one in two teachers just did not have the confidence to teach autistic children. Unsurprisingly, 50% of autistic children had a miserable time at school and were not looked at.

The hon. Lady is right to give credit to the parents, who are on an incredible journey and are struggling themselves. Battling for the support that they need at the same time as providing care is emotionally draining. We all work with those parents, and we have so much respect for them.

Oral Answers to Questions

Seema Malhotra Excerpts

Tuesday 19th February 2019 Commons Chamber

[Caroline Dinenage]

I am delighted that my hon. Friend mentions Headway, which is a fantastic organisation that does great work. I meet it regularly in my own constituency and I would be more than happy to do so with him. The partnership boards of local integrated care systems, which will plan and shape those services, will include the voice of voluntary services and the voluntary sector in their area. His local Headway branch would be well advised to engage with that group.

[Seema Malhotra (Feltham and Heston) (Lab/Co-op)]

Some 1.3 million people are living with traumatic brain injury and related disabilities. Brain injury can be caused by excessive alcohol consumption, particularly among young people. What support will the Government be giving to local health services to increase the use of technology, particularly using creative industry developments, that can help rehabilitation for those with brain injuries?

[Caroline Dinenage]

There are several points here. On local community services, as the hon. Lady heard, we are putting an extra £4.5 billion into community and local health services. Through the National Institute for Health Research, we fund brain injury research into how technology and other innovations can be used to better support people.

Oral Answers to Questions

Seema Malhotra Excerpts

Tuesday 15th January 2019 Commons Chamber

[Mr Speaker]

Including, of course, as the right hon. Gentleman knows from his recent meeting with me, the University of Buckingham in my constituency.

[Seema Malhotra (Feltham and Heston) (Lab/Co-op)]

One of my constituents, who is 17, seriously ill with breathing difficulties and in need of urgent specialist care, is waiting for a room to be available at the Royal Brompton. Is the Secretary of State aware of any delays and whether these have been caused by not having sufficient NHS facilities at the Royal Brompton to meet such urgent demand?

[Matt Hancock]

I have not heard any of the details of that case before now. If the hon. Lady will write to me, I will be very happy to talk to her and engage with her on what we can do for her constituent.

NHS Long-term Plan

Seema Malhotra Excerpts

Monday 7th January 2019 Commons Chamber

[Matt Hancock]

Yes, of course. I am sure the whole House will join me in passing on our condolences to the family, friends and colleagues of my hon. Friend’s caseworker. He is doing right by her in raising that issue in the House. Of course we will keep working with those organisations, which do brilliant work. In fact, there is an event in the Commons tomorrow with Bloodwise, which the Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Winchester (Steve Brine), will attend.

[Seema Malhotra (Feltham and Heston) (Lab/Co-op)]

Before Christmas, I attended the inaugural event of the Addie Brady Foundation, in memory of 16-year-old Addie, who died a year ago from a brain tumour—her second primary cancer. She was affected by a rare genetic condition called Li-Fraumeni syndrome, a feature of which is a high risk of cancer and repeat cancers. Her family, other families and an international panel of experts have been campaigning for a national screening programme for people suffering from Li-Fraumeni syndrome. Can the Secretary of State confirm whether his announcement today includes much needed Li-Fraumeni syndrome screening on the NHS, particularly for children, which would extend and save lives?

[Matt Hancock]

I will certainly take up the hon. Lady’s suggestion with Mike Richards, who is running a review of our screening programmes to ensure that they are all fit for purpose, run as effectively as possible and targeted at the right people.