Rare Diseases Strategy

George Howarth Excerpts

Tuesday 28th March 2017 Westminster Hall

[The Minister of State, Department of Health (Mr Philip Dunne)]

Mr Pritchard, I am grateful for your generosity and guidance. You are chairing the debate admirably, as usual. I congratulate my hon. Friend the Member for Bath (Ben Howlett) and the other members of the all-party group on rare, genetic and undiagnosed conditions on securing the debate and on producing a timely and informative report. My hon. Friend rightly pointed out that the Under-Secretary of State for Public Health and Innovation would have been the Minister responding to the debate, but I am sure he will understand why she cannot be here: she was invited to accompany the Prime Minister elsewhere today. I regret, for him, that that proved an invitation hard to resist. It has, however, given me the opportunity to learn more about rare diseases and I am grateful to my hon. Friend for that. I hope to be able to address some of the comments that he and other hon. Members have made.

As has been acknowledged, the UK strategy for rare diseases was published in 2013 and set out a high-level framework that aimed to improve the lives of those affected by rare diseases. The Government remain committed to implementing the strategy by 2020 and are aware that the real test of success will be tangible improvements experienced by patients with rare diseases and their families. Last month’s publication of the all-party group report is a timely reminder that there is still much to do, as has been mentioned by all speakers today. However, it is important not to forget just how much we have achieved.

NHS England has been actively working to raise the priority given to rare diseases. In particular, advances in genomics are already having a positive impact on patients with rare diseases. NHS England has embarked on a world-leading project to establish genomics in mainstream healthcare, establishing a network of 13 genomic medicine centres that will underpin the delivery of genetic medicine over the years to come. The Government have also made a clear commitment to developing genomics, and that is best demonstrated by the £500 million investment in the 100,000 Genomes Project, which is the biggest national sequencing project of its kind in the world.

The full potential for genomics can be realised only with continued research into rare diseases, and the National Institute for Health Research has established a Rare Diseases Translational Research Collaboration to make maximum use of its significant research infrastructure. I welcome the support given by the Opposition spokesperson, the hon. Member for Washington and Sunderland West (Mrs Hodgson), to that initiative. It is supported by a £20 million investment and has already recruited more than 15,000 patients to support 56 projects related to rare diseases.

I am pleased to say that the UK is a recognised leader on many rare diseases. We are an active member of the International Rare Diseases Research Consortium and have been actively involved in the establishment of 24 European reference networks—ERNs—for rare disease, six of which we are leading on. I was at an informal meeting of EU Ministers early last week, where our role in punching above our weight for the ERNs was widely acknowledged.

An important element of our plans will be to continue to look for ways in which the UK can work with international partners. The all-party group, along with hon. Members present in the debate and a number of external groups in the rare diseases community, have raised concerns about the perceived impact of the planned changes to the methods used by the National Institute for Health and Care Excellence for the evaluation of highly specialised technologies. That is one of a set of proposals being introduced by NHS England and NICE following the recommendation in last year’s Public Accounts Committee report on specialised services that the Department of Health and our arm’s length bodies should better consider affordability when making decisions, including on rare diseases. NICE and NHS England have consulted on the proposals, and I can assure hon. Members that they have listened carefully to the responses and made substantive changes.

The planned changes to NICE’s methods, as amended following the consultation, recognise the unique position of patients with very rare diseases and the need to pay a premium for their treatments. The changes introduce a clearer framework for the assessment of drugs for very rare diseases, which will better enable commercial discussions between NHS England and the pharmaceutical companies, in line with the recommendations of the accelerated access review. The consultation originally proposed the introduction of a threshold of £100,000 per quality-adjusted life year. In response to feedback, that single threshold has been replaced by a sliding scale, which means it will be possible for transformative treatments that offer significant health gains to be approved up to £300,000 per QALY. That is 10 times greater than NICE’s threshold for treatments considered by its mainstream technology appraisal process.

My hon. Friend the Member for Bath can speculate, but I gently say to him that it is not possible to predict how likely any individual new drug is to be recommended by NICE under the changes in the future, and we cannot retrospectively apply the new framework to past decisions. Furthermore, it is important to stress that even when NICE is not able to recommend a drug for the full patient population, NHS England may still be able to fund a drug for a subgroup of patients who will most benefit from treatment.

The hon. Member for Linlithgow and East Falkirk (Martyn Day) referred to the co-operation of Scotland, along with the other devolved nations, in collaborative work. We acknowledge and welcome that, and we acknowledge that Scotland has published an implementation plan. My hon. Friend the Member for Bath referred to four examples of drugs that NICE had approved for use for rare diseases in England, and they are available for use in Northern Ireland. The hon. Member for South Down (Ms Ritchie) asked about that. In particular, Translarna was approved for Duchenne muscular dystrophy, which she referenced. I gently say to the hon. Member for Linlithgow and East Falkirk that those four drugs are not yet available in Scotland—at least, not according to my briefing—other than one that is available for restricted use. Although we wish to continue co-operating with Scotland, the system in England has some advantages thus far.

I am confident that the planned changes create a framework that will enable truly transformational new drugs for patients with rare diseases to be made available where companies are willing to set prices that fairly reflect the added benefit they bring.

[Mr George Howarth (Knowsley) (Lab)]

I congratulate the hon. Member for Bath (Ben Howlett) on securing this debate. I welcome the progress that the Minister has described, but one thing that has been touched on in several speeches is the difficulty people have as a result of the nature of rare diseases. When they are trying to get a diagnosis in the first instance, medical practitioners often have no experience of the disease. As he develops his speech, or as the Department develops the policies and framework for delivering more services, will consideration be given to how that knowledge can be more widely spread?

[Mr Dunne]

The right hon. Gentleman anticipates something that I will come to shortly in my speech, but we acknowledge that challenge and we recognise that there will continue to be concerns among patient groups and Members. I hope that my hon. Friend the Member for Bath in particular will understand that the proposed changes are intended to put in place a fairer, more transparent framework for the evaluation of technologies for very rare diseases as they are developed.

I want to respond specifically to the challenge posed by my hon. Friend and the shadow Minister on the real need to ensure that the commitments set out in the UK rare disease strategy are fully realised. It is right that last week in the House, my hon. Friend the Under-Secretary of State for Public Health and Innovation made a personal commitment to that effect in her response to my hon. Friend’s oral question, and I am happy to reiterate that commitment today. I can confirm to the House that I have agreed with the chief executive of NHS England that by the end of this year he will deliver an implementation plan for those of the 51 commitments of the UK strategy for rare diseases for which NHS England has lead responsibility. For those commitments that fall outside NHS England’s remit, the Department will work collaboratively across stakeholders to contribute to the implementation plan. I am sure my hon. Friend will agree that the development of that plan will be a significant step in the journey.

Social Care (Liverpool)

George Howarth Excerpts

Tuesday 7th March 2017 Westminster Hall

[Maria Eagle (Garston and Halewood) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Hollobone.

I congratulate my hon. Friend the Member for Liverpool, Riverside (Mrs Ellman) on obtaining this crucial and timely debate. She set out in full and with great clarity the situation facing Liverpool and other local authorities in the city region, as the council seeks to set a lawful budget while desperately trying to keep going the public services on which so many of our constituents depend. She set out in great detail and with pertinent facts and figures many of the things that I was going to say about Liverpool. I endorse her speech fully—it was excellent.

Liverpool has had £420 million cut from the city budget since the Lib Dem-Tory coalition imposed cuts in 2010. There has also been the never-ending slashing of public services provision by this Government and their predecessor, and another £90 million has to be found. To illustrate that, Liverpool raised £147 million in council tax in the last financial year, but it spent £151 million on adult social care. I will emphasise that: Liverpool is having to spend more on adult social care alone than it can raise in council tax.

My hon. Friend set out some of the other concerns and problems. The demand for social care assessments is rising. Despite the cuts she described to the money that can be spent on adult social care, the demand for help of those depleted services from our citizens and constituents has increased by 15%. The demand for social care assessments in Liverpool has gone up from 18,000 a year in 2020 to 21,000 a year now. As she set out, Liverpool supports 9,000 people annually to some degree with a care package at home. That is fewer than half of the people who have asked to be assessed, so it is clear that only those with the highest needs get help, and they may well not get a level of support from which they benefit and which might keep them out of more acute services for longer with a better quality of life.

Liverpool City Council announced in its budget proposal that it intends to increase council tax. It will of course do so reluctantly, because many of our fellow citizens will find it difficult to afford an increase, but that course of action must be taken. I say in all sincerity to the Minister that it is not credible to claim that the shortfall that results from resources being cut by 70% can be made up by efficiency savings. I could not lose 70% of my resources and make up the difference in efficiency savings.

My constituency of Garston and Halewood also covers part of the Knowsley metropolitan borough, which is a smaller authority but, thanks to this Government and the Lib Dem-Tory coalition Government that preceded it, it faces financial challenges that are just as severe. Its revenue is currently £148 million. It has had to make cuts of £86 million since 2010 and will have to find a further £17 million over the next three years. That is a total loss for a small authority of more than £100 million. Both Liverpool and Knowsley are among the top five hardest hit local authorities. Knowsley’s income will have gone down by 56% by the end of this process.

Knowsley raised £43.2 million in council tax in the last financial year, yet it spent £47.1 million on adult social care alone. Are we seeing a pattern here? Just like Liverpool, Knowsley had to spend more on adult social care alone than it was able to raise in council tax this year. The pressures on the social care budget are huge. Because the population is ageing and people are living for longer—something we should all celebrate—Knowsley expects to face additional pressures of £10 million in the next three years for adult social care alone.

[Mr George Howarth (Knowsley) (Lab)]

Does my hon. Friend agree that the picture she paints is grim, particularly for Knowsley? Does she, like me, envisage a time in the not-too-distant future when Knowsley simply will not be able to meet its legal responsibilities unless additional funds are found to ensure that adult social care is available?

[Maria Eagle]

I well understand my right hon. Friend’s concerns. Indeed, the fear is that it will simply be impossible. Knowsley has not had 56% of its statutory obligations removed—just 56% of the money with which it is supposed to meet them. Knowsley, too, is looking at a council tax increase of 4.99%, with 3% ring-fenced for adult social care. This will be the first time that it has increased council tax in five years, and it will do so reluctantly, but that will generate just £1.9 million a year—a total of £3.8 million over the three-year period. That will pay for only just over a third of the pressures that are expected in adult social care alone.

Some additional money will come through the improved better care fund, and there will be one-off allocations—albeit of less than £1 million—through the adult social care fund, but none of that will meet the pressures that are apparent now. I say again to the Minister in all sincerity that one-off payments cannot deal with permanent pressures that are increasing relentlessly day by day when budgets have been cut so drastically.

Unfortunately, Government actions elsewhere mean that those pressures could easily increase rather than decrease because of what is happing in the health service, as my hon. Friend the Member for Liverpool, Riverside mentioned. Greater pressures on our NHS hospitals and acute services, which have financial problems, the Government’s never-ending austerity mania and real-terms reductions in resources for the NHS over the next few years mean that our NHS services, too, are under enormous pressure. That is where the Merseyside and Cheshire sustainability and transformation plan comes in, but that aims to offset £908 million of financial pressures on the local NHS. It has changed from something that was welcome as a way of improving co-operation and transforming our services into something that is simply about saving money over the next few years. I am afraid that that will not make things easier.

There has been a lack of consultation between the STP leaders and the councils. Neither of the councils that I have mentioned feels like they have been consulted at all about the proposals that are supposed to be going ahead for the NHS, despite the fact that they will face pressure from hospitals that want to get people back into the community—but to what? There is ever-decreasing resource in the community to help look after them.

Tomorrow’s Budget is a chance for the Chancellor to tackle some of those problems with vigour. We hope that he will, but if the Government’s briefing in the newspapers is to be believed, it looks like he will not. It is reported that he will announce an emergency fund of £1.3 billion to tackle the social care crisis. That is only half of the £2.6 billion that the Local Government Association estimates the spending gap will reach by 2020, and it appears that the Chancellor will direct it at schemes that aim to tackle bed-blocking. Knowsley will not benefit from such money, because it has tackled that problem already. Indeed, the Minister always prays Knowsley in aid when he tries to say that bed-blocking is not a problem in some authorities. Knowsley has lost 56% of its resource, and it now looks like it will be punished for being efficient while less efficient local authorities get a slice of the money that the Chancellor will give out tomorrow.

Apparently, the Chancellor will also establish another long-term review of social care funding. Although that is welcome, because this needs to be tackled in the end as a proper long-term policy issue, it will not tackle the problems that Liverpool and Knowsley face now. I must also observe that both Governments the Minister has been a member of have done the same, and they simply ignored the proposals that ended up emerging. The shadow Cabinet of which he was a prominent member before 2010 sabotaged the attempts by my right hon. Friend the Member for Leigh (Andy Burnham) to have cross-party talks about a solution seven years ago for a cheap election poster alleging that Labour was proposing a death tax. So we will see.

Meanwhile, the social care crisis in Liverpool and Knowsley worsens and the Government simply pass the buck, play politics and offer zero leadership—I am afraid we have come to expect that from them. Those who lose out are the elderly and the vulnerable, who rely most on the services that this Government’s actions decimate the most.

Agenda for Change: NHS Pay Restraint

George Howarth Excerpts

Monday 30th January 2017 Westminster Hall

[Catherine McKinnell]

My right hon. Friend puts his point very succinctly and absolutely correctly.

[Mr George Howarth (Knowsley) (Lab)]

I hesitate to interrupt my hon. Friend, because she is making such a good case, but does she agree, as my right hon. Friend the Member for Warley (Mr Spellar) said, that agency working, which is very expensive, is really a false economy? If nurses leave full-time employment in the NHS to work for agencies, they cost the NHS two or perhaps three times more, so there are no savings whatsoever.

[Catherine McKinnell]

My right hon. Friend is absolutely right. It is also a false economy to lose professionals, given all the money that has been invested to make them a well-trained, well-performing workforce.

As hon. Members will be aware, Agenda for Change was introduced in 2004 as a system of pay, terms and conditions, and it applies to more than 1 million directly employed clinical and non-clinical NHS staff, with the exception of doctors, dentists and some very senior managers. It was designed with the intention of delivering fair, transparent pay that is better linked to career progression, skills and competencies. Agenda for Change is based on the principle of equal pay for work of equal value. According to NHS Employers, the system allows NHS organisations to

“design jobs around the needs of patients rather than around grading definitions”

and individual NHS employers are better able to define the skills and knowledge that they want the staff in those jobs to develop.

Importantly, in relation to this debate, Agenda for Change was also designed to enable employers to address more local recruitment and retention difficulties. However, as with hundreds of thousands of people who work in the public sector, all Agenda for Change staff have been affected by the previous and current Governments’ imposition of pay restraint.

Defibrillators in Public Areas

George Howarth Excerpts

Monday 16th January 2017 Commons Chamber

[Maria Eagle]

I congratulate the hon. Lady on bringing forward her Bill. Yes, it was done under the 10-minute rule procedure, but it is now there, and I echo her call for the Government to adopt it. As she realistically observed, the only reason it may not progress in this Session is that there is no time given its position on the list for private Member’s Bill Fridays. The Government could transform that in an instant by taking on board aspects of the Bill—or the whole Bill, preferably—and putting them into some of their own legislation. The Minister might have something to say about that.

[Mr George Howarth (Knowsley) (Lab)]

I congratulate my hon. Friend on the eloquent and forceful speech she is making. She has already paid tribute to the King family. May I add my tribute to them for their great dignity and the constructive way in which they have taken the issue forward? I agree with the hon. Member for Lewes (Maria Caulfield) that the ten-minute rule Bill has virtually no chance of getting on to the statute book, but the Government could, if they had a mind to, adopt it and turn it into a Government Bill. Of course, if it is defective in any way, it could be amended, but nevertheless the spirit of it could be carried forward.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health (David Mowat)]

The hon. Member for Garston and Halewood (Maria Eagle) started her excellent speech by saying that defibrillators save lives. We accept that; there is no question but that that is the case. Before I respond to the points that she and my hon. Friend the Member for Twickenham (Dr Mathias) made, I want to add my congratulations to the Oliver King Foundation on its work, and to the family on turning a terrible tragedy into something positive. We have heard about what has been achieved in Liverpool, as well as more widely.

One of the asks of the hon. Member for Garston and Halewood was that I meet her and the family to talk about how to take this matter forward. I confirm that I would be very happy to do so. Indeed, the sports Minister, my hon. Friend the Member for Chatham and Aylesford (Tracey Crouch), who is with me on the Front Bench today, also feels passionately about this matter, which was in the sport strategy that was published about a year ago. I am happy to set up such a meeting. I am not in a position to set out tonight the Government’s view if the private Member’s Bill does not go through, but if the hon. Member for Garston and Halewood organises the meeting, I would be happy for it to be more widely attended by interested Members.

[Mr George Howarth]

I think the hon. Member for Lewes (Maria Caulfield) accepts, as I certainly do, that although a ten-minute rule Bill might have been a good way to raise the issue, it is not a suitable vehicle for taking this forward. The request is that the Minister and the Department look at the Bill as it stands, and that, if it needs to be amended or redrafted, they suggest ways of doing so, or even take it on themselves. The Government should bring a measure forward, rather than leaving this to a legislative vehicle that simply will not work.

[David Mowat]

As I have said, I am not in a position to say tonight what the Government will do in respect of the Bill. I am willing to say that we will meet and talk about it after this debate. As I will come on to say, there is a question about the extent to which defibrillators should be mandatory, as was raised in relation to schools, versus dealing with this through guidelines and other forms of help. I will try to make some of those points later.

The hon. Member for Garston and Halewood made the point that the survival rate of people who have an out-of-hospital cardiac arrest is in the order of about 10%. It varies a little by ambulance service—it can be between 7% and 12%—and if we could get all ambulance services up to 12%, that in itself would save many lives. There is no question but that if defibrillators were available in time, the figure would be at least doubled and perhaps increased by more than that. We also accept the figure from the British Heart Foundation, which I think she cited, that every minute of delay reduces the probability of success by something like 10%.

We need to achieve two things: we need to create more access to defibrillators; and, as my hon. Friend the Member for Calder Valley (Craig Whittaker), who is not now in the Chamber, said in relation to the incident in his family, we also need to increase training and CPR awareness. I recall doing CPR training and being taken through all this two years ago in a church hall in Warrington. It really did not take very long, and I hope I can still remember how to do it. Using these things must be done in parallel with other training. I understand that some defibrillators work fairly easily without too much training, but experience of and ability in CPR buys time, which is what we need to achieve.

I will talk about what the Government are doing in relation to public places, schools, the workplace more generally and, as I have mentioned, sports. I will also take a few minutes at the end of my speech—I do not think that we will be here until 10 o’clock—to talk about screening, which was mentioned as something we ought to consider.

Since 2007, ambulance trusts have had responsibility for the defibrillators around the country. That is because they are where 999 calls go, and they ought to know where the nearest defibrillator is when they get one. If there is a code or the defibrillator is locked, they are responsible for that. In addition, the British Heart Foundation in England—this is also happening in Scotland—is trying to create a database of the defibrillators that we believe are out there. The BHF thinks that there are something like 14,000 defibrillators. Unfortunately, for historical reasons that have grown up over time, there could be maintenance issues with some of them. We need to bring all that up to date, and the BHF is leading the charge on that.

In the past two years, the Government have allocated £1 million per annum for defibrillators in public places. That money is for England only and has led to some success. We had 700 new defibrillators last year as well as the cabinets that go with them, in addition to a range of CPR training, and we expect the same thing to happen this year. That represents an appreciable increase in the number of defibrillators. As I have said, we are doing that because we believe that defibrillators save lives, as does the training around them.

The Member for Garston and Halewood talked about schools. She rightly said that schools have been issued with guidance saying that we expect them to consider the installation of defibrillators, but it is also true to say that not every school has a defibrillator. The hon. Lady also talked about defibrillators costing in excess of £1,000. The scheme that we have put in place for schools uses NHS Supply Chain, which means that they can source a defibrillator for something like £435, which is clearly better than £1,000. I accept that that still comes out of a school’s budget, but nevertheless a great number of schools are taking that up. Schools can also apply to the British Heart Foundation scheme that we talked about earlier, provided that the defibrillator is publicly accessible, which in many cases it would be. However, I accept that we have not mandated such provision, as the Bill asks us to—I will talk about that a little later.

There are workplace health and safety aspects that every employer must consider. We have put in place a requirement that, from 1 January this year, everybody in a workplace who is first aid-accredited—obviously health and safety regulations require that there are such people—must have defibrillation training and be in a position to use those facilities. That is now happening, and it includes everybody who will have to do a first aid refresher course.

As I mentioned, sport is a priority area. Sports governing bodies will have formal responsibility, and many sports are taking this forward. We know of the incidents that have occurred. I think it was Fabrice Muamba during a Tottenham game who was saved by a combination of a defibrillator and a doctor in the crowd who knew CPR, and rugby league and rugby union are also involved. The Football Association has made available a £1.2 million grant to buy 1,300 defibrillators for use at football grounds up and down the country—and not just at the very large grounds. I am involved at Warrington Town football club, and we will be getting a defibrillator under that scheme as well. All FA-accredited coaches will also have to be CPR trained.

I know from the sports Minister that the sport strategy has made defibrillators in sports a priority. She has nominated Baroness Grey-Thompson to take this forward, in terms of putting a duty of care on the various governing bodies. It is an area of priority.

It is also important to understand more about sudden cardiac arrest and to make progress through research. The Government have provided funds through the National Institute of Health Research particularly to deal with the genetic aspects of the condition, given that it has a generic element. Work on gene discovery is also going on at the Oxford Biomedical Research Centre. I am not saying that we are close to a solution or a clear way forward, but this is a research priority. If we understood the genetics better, it would help us to do screening better, so let me move on to screening.

There is a school of thought that screening for children’s genetic predisposition to heart problems could make a difference. In 2015, the UK’s screening authority, the screening committee, considered screening people between the ages of 12 and 39. It did not support that, however, and I believe that that position is consistent with that of every other country in Europe. We have looked into this, and my understanding is that no other country carries out such screening. A number of reasons have been given: it is difficult to get clarity about the numbers of people who would be affected; there is concern that even if screening were to identify people with a potential weakness, there is no consensus on how that should be managed; and, finally, there is a significant concern about the efficacy of a test, especially regarding the number of false negatives and false positives, which it was felt could do more harm than good. If peer-reviewed evidence came forward, based on the findings of places that had conducted screening work, the matter would be reconsidered, but without that, it will not be looked at again until 2018. That leaves us with the issue of how to make more progress on the number of defibrillators available. Perhaps the difference between the hon. Lady’s remarks and my response is not whether it is a good thing to make progress on defibrillators, but whether the Government should mandate putting defibrillators in every school and sports facility.

[David Mowat]

I accept that. As I say, the guidelines are clear: any school can make use of the NHS Supply Chain facility to put in a defibrillator for £400 or so.

[Mr George Howarth]

The Minister talked about screening, which my hon. Friend the Member for Garston and Halewood (Maria Eagle) also mentioned. Although I understand the conclusions and the advice that has already been given, to ensure that there is no confusion, is it not appropriate that if somebody has already been affected, screening should be available to their family, particularly their siblings?

[David Mowat]

I accept that. Also, a number of sports governing bodies offer screening for people who participate in their sports, but of course that is not the national screening of all 12 to 39-year-olds, which was the issue that was looked at.

Let me finish by reiterating my willingness to meet the hon. Member for Garston and Halewood, other Members and people from the Oliver King Foundation.

Contaminated Blood and Blood Products

George Howarth Excerpts

Thursday 24th November 2016 Commons Chamber

[Diana Johnson]

My hon. Friend puts the point very well. The APPG and the right hon. Member for North East Bedfordshire (Alistair Burt) have spoken to people about what they want from the revised scheme, and they have said they want the option of a lump sum payment, if that would be better for them than regular payments. It is important that we give people the ability to make those decisions for themselves.

As my hon. Friend the Member for Hammersmith (Andy Slaughter) just alluded to, the APPG still believes that we need a Hillsborough-style panel inquiry to allow people to tell their stories and to say what happened to them and how it affected them.

[Mr George Howarth (Knowsley) (Lab)]

Will my hon. Friend give way?

[Diana Johnson]

I am happy to give way to my right hon. Friend, who has great knowledge on this point.

[Mr Howarth]

I am grateful to my hon. Friend, who is making a very powerful case, as she always does, and I congratulate her on the way she is doing it. She is right about the potential of a Hillsborough-style inquiry—I note that the Prime Minister is a great fan of that process, and has said so previously—but we need to take care that such an inquiry does not put all the important and urgent issues she has raised into the shade while the process takes place. The two things need to be separate.

[Diana Johnson]

I agree with my right hon. Friend, who makes his point very well. We need to make sure that any new support scheme moves quickly. We need to get on with this. The previous Prime Minister, when he apologised on behalf of the nation 18 months ago, also allocated £25 million, but none of that has been spent yet, as I understand it. We need to make sure that a scheme is introduced as quickly as possible, although obviously with our concerns having being addressed. But absolutely the two things can run in parallel, and a Hillsborough-style panel inquiry would give people the opportunity of a truth and reconciliation inquiry. I still think it a key requirement if there is to be any real sense of justice and closure.

--- Later in debate ---

[Alistair Burt]

Yes, I will. I will turn to those who are co-infected, but staying on discretionary payments for a moment, I just think that the position was not clear enough. As the trusts were administered separately and not by the Department, I do not think that there was full awareness that the discretionary payments had become a fixed part of people’s income. There is much more awareness of that now, and dealing with this is essential because people are extremely worried as they do not see such payments specifically included in the scheme, and I hope that they will be part of it.

I would also like a small amount of money to be made available for some of the things thrown up through the system that are not recognised. I am thinking in particular of a family in which two young boys lost their father and two uncles, and were taken into care. Their lives were changed hugely because of that. There is no part of the scheme that fits the agonies that they went through, so I wonder whether there could be some recognition of that, with a small part of the fund kept for unusual circumstances.

I must reiterate my determination that there should be some form of inquiry into what has happened. We know—it is on record—the sense of scandal about this. We have heard from former Ministers, including Lord Owen, who made a speech relatively recently in which he was very clear about what happened. He spoke about ministerial documents being “scrapped” and said:

“I have become convinced that there has been a cleaning-up of documents”,

and that

“there was a decision to clean up all the files and stop some of the incriminating evidence”.

Given that this major issue has led to so many deaths and so much misery, and that people know that something went wrong, it cannot be right that there is still not a public space so that the people affected can know what happened.

The inquiry process worked well for Hillsborough and Bloody Sunday, although we know that the position is currently clouded by what is happening with the child abuse inquiry. I do not think that a full public inquiry is necessarily the only vehicle to deal with this, but there needs to be some way for the Department to answer in a way that it has not done up to now, which it cannot do through the mere revealing of documents. It remains essential that we press for such a process.

[Mr George Howarth]

rose—

[Alistair Burt]

I will not give way, if the right hon. Gentleman will allow me. I have taken two interventions and will not get any more time.

I now want to raise specifically the issue of those who were co-infected. The majority of those infected by contaminated blood were infected with hep C. Some 1,200 people were co-infected with HIV and hep C, and perhaps only 250 of them are left alive. The suffering experienced by those who were co-infected is different from that of those who were mono-infected. There is now the possibility of treatment for hepatitis C, which we all welcome. Such treatment has considerably changed the outlook for many people, but it is not available for the co-infected.

This discrete group cannot grow any larger; it is diminishing all the time. Those who are co-infected have experienced things in their lives that have not affected others, such as being told their length of life right at the beginning. I know of those who were told when they were very young that they might have only five or six years left. They thought that the education they were going through was of no consequence—what was the point?—and nor was looking after any sum of money they were given, because they might as well spend it if they were not going to live. Their outlook is now different, because medical treatments have allowed them to stay alive, but their condition is still extremely serious and varies almost from day to day.

For that diminishing number, a lump sum, which the hon. Member for Kingston upon Hull North and others have mentioned, might be a possibility. They do not want to be dependent on the system; they want recognition of what they have lost, including their opportunities, and a lump sum might be the answer for them. I would be very grateful if there is now some consideration for the co-infected, because much of the debate has tended to be about the majority. I do not think that that is necessarily wrong, because what is provided for the majority is very important, but the co-infected matter.

We have been here too often. I doubt, sadly, that my hon. Friend the Minister will be the last Minister to talk about this issue, but we will not go away and the House will not leave this. This is a collective shame, because Government after Government have not grasped that this just needs a final settlement. We can find the money for other things. This issue cries out for that sort of settlement and we will not stop.

Diabetes Technologies

George Howarth Excerpts

Wednesday 23rd November 2016 Westminster Hall

[Mr George Howarth (Knowsley) (Lab)]

I congratulate the hon. Member for St Ives (Derek Thomas) both on raising this very important subject and on the constructive and helpful manner in which he raised it.

I intend to confine my remarks to type 1 diabetes and, in particular, young type 1 diabetics. I should say that I am indebted to both Diabetes UK and the Juvenile Diabetes Research Foundation for the very helpful briefing that they provided and for the important work that they do on behalf of people with diabetes.

Diabetes, whether type 1 or type 2, is a life-changing condition regardless of the age at which it is diagnosed, but for young type 1 diabetics, it is also a lifelong challenge. Young type 1 diabetics face a daily and lifelong routine of monitoring glucose levels and administering the appropriate doses of insulin. It is not insignificant that one quarter of hospital admissions for ketoacidosis are of 16 to 25-year-olds; that is quite a shocking statistic.

At the same time, dealing with the transition to adulthood, with all the attendant biological, psychological and physiological changes that occur, can be even more challenging for young diabetics and their families. Many young diabetics face bullying. The hon. Member for Upper Bann (David Simpson) referred to a problem in schools. Quite often, because of the misconception about what type 1 diabetes is, young diabetics will face taunts: “Well, it’s your own fault because you don’t eat properly”, “You’re overweight” and so on. It is bad enough that young diabetics face bullying in school. Very often, as the hon. Gentleman signified, schools simply do not know how to deal with this issue.

One thing about being a type 1 diabetic is that because their blood glucose levels can be very unreliable, they sometimes need to take glucose, which means that at a certain point their absolute priority is to eat something. They have to be able to eat something to even out their blood sugar levels, yet all too often teachers will not allow them to use the classroom in those circumstances.

[The Parliamentary Under-Secretary of State for Health (Nicola Blackwood)]

indicated assent.

[Mr Howarth]

I see the Minister nodding. This really is a problem. Schools need to be advised on how to deal with these situations, so that in every classroom the teacher is aware, whether or not they have a type 1 diabetic in their class, of what they are supposed to do in those circumstances. The lack of understanding in many schools—not all of them, as some deal with the matter very well—must be tackled.

However, I do not want to be overly gloomy about the problem. Organisations such as the JDRF and Diabetes UK, in conjunction with others, including the all-party parliamentary group for diabetes, of which I am a member, are both raising the profile of the way type 1 diabetics are being failed by the healthcare system and suggesting constructive ways of improving the situation. Later today there will be the launch of a report, not specifically on type 1 diabetes but on how services can be better organised. That is the result of many months of taking evidence from expert organisations. I hope that Ministers will study that report closely.

With regard to progress, scientific research is making great headway. The hon. Member for St Ives, who opened the debate, highlighted some of the scientific research going on and the technologies that are available. It is in my view highly likely that a cure will be found well within the lifetime of today’s young diabetics. Building on the technology that already allows automatic continuous glucose monitoring and automatically pumped insulin, an algorithm for combining the two into an artificial pancreas already exists. The hope is that it will not be long before that technology becomes the norm. More development work is going on, but the research and tests that have been carried out indicate that that system works and can bring about a massive improvement in the lives of young people and others who suffer from diabetes, because it enables them to keep their blood glucose at an even level.

I want to say a few words about a particular problem that some young type 1 diabetes sufferers experience. As we know, as a society we face a problem—particularly, although by no means exclusively, among young women—as regards body image. The media, magazines and society in general put forward an idealised view of what a woman or, for that matter, a man should look like. We know about eating disorders that arise from that wholly inappropriate promotion of a “perfect” shape. I do not profess to be an expert on this issue, but my experience of life is that human beings come in all shapes and sizes, none of which is more acceptable than another—but that is just a personal view. However, some young type 1 diabetics discover—this is easy to find out through social media—that by manipulating their insulin intake, they can achieve rapid weight loss. To some young people, that sounds like a great thing to be able to do. Someone can lose perhaps half a stone in a week simply by not taking the amount of insulin that they require. Of course, the problem is that it leads to major medical complications and, in some cases, can end fatally.

Those who do fall into the habit, which amounts to a highly specialised eating disorder, need to be able to access support from diabetologists and from either psychological or psychiatric specialists. All too often, though, that support is not available—at least not in one place—at the time when the young person needs it most and they are left trying to negotiate a sort of medical specialists ping-pong game between, on the one hand, diabetologists, who do not understand the psychological problem that the young person is experiencing, and on the other hand psychologists or psychiatrists, who do not understand all the scientific and medical issues about their diabetes. I know that that is not the Minister’s specific area of responsibility—[Interruption.] Oh it is, she tells me, great—but I put in a plea for her to really give some thought to how those services can be co-ordinated in such a way that means those young people are not left travelling from one place to another, often with long distances involved, to try to access support, when all they can get is somebody who understands one aspect of their disease and the particular manifestation of that disease they have. We are not talking about tens of thousands of young people; we are talking about hundreds, but nevertheless these are young lives and they need to have proper access to all the services that they require.

I will conclude with a couple of questions, which are asked in an entirely constructive spirit. Can the Minister give an assurance that the Government will take an active interest in the research that is going on into technology, and that it will be properly supported? Does she agree that the achievement of making these technologies normal, particularly the artificial pancreas, needs to be pursued with absolute rigorousness? That could be delivered very quickly if the Government took an active interest in it. Will she commit—both through the technological means and better treatment design—to ensuring that the various services that can prevent serious complications are properly integrated so that the medical ping-pong is overcome?

I hope that I have not gone on for too long. Knowing you as I do, Mrs Gillan, I know that you would have told me if I had. Again, I thank the hon. Member for St Ives for giving me the opportunity to say the things that I wanted to say. I am sure that the young diabetics around this country who have the opportunity to do so, will be glad that at least their plight has been raised by at least one Member of this House.

[Mrs Cheryl Gillan (in the Chair)]

Unless any other Members are seeking to catch my eye, we will move to the wind-ups. I call Mr Martyn Day.

Oral Answers to Questions

George Howarth Excerpts

Tuesday 15th November 2016 Commons Chamber

[David Mowat]

In 2016, the Government implemented a new formula for allocation, which means a better deal for underfunded areas such as Winsford. As my hon. Friend has noted, however, the extra money is being phased in over a few years to prevent distortions. This year her local CCG received an increase of more than 3%, and the funding will continue to catch up as a result of the new mechanism.

[Mr George Howarth (Knowsley) (Lab)]

The Minister rightly said that greater integration between health and social care was a prize worth striving for. Why do local government leaders on Merseyside feel that they have been excluded from discussions about the STP process? If we are to make progress, they need to be part of the solution.

[David Mowat]

As I said earlier, local engagement with all stakeholders is necessary. The STP for Cheshire and Merseyside will be published tomorrow. It is essential for local authorities to engage in it as it evolves, and it is essential for MPs to engage in it—as critical friends—to make the plans better.

National Arthritis Week

George Howarth Excerpts

Thursday 20th October 2016 Westminster Hall

[Mr George Howarth (Knowsley) (Lab)]

Although I do not, as far as I know, have an arthritic condition, I do have an impacted disc. Frankly, when it flares up, without the support of family members, and in particular my wife, I would be in an impossible situation. It is important that we pay tribute to all those carers and family members who support people with these conditions.

[Liz McInnes]

I thank my right hon. Friend for that relevant intervention. We must never forget the usually unpaid work that carers do and the vast contribution they make to keeping people out of hospital and saving the NHS money.

As many other hon. Members have done, I also thank Arthritis Research UK for the work it does highlighting the issues around this disease, which affects nearly one in six people in the UK. Arthritis Research UK provides the support that people with arthritis need, such as in-work help and funding for accessibility, social care and medical research. Arthritis Research UK spent £6.6 million on research this year, and during 2014-15, it committed £30.9 million of funding across Europe with its research partners. As many hon. Members have mentioned, it promoted World Arthritis Day, which was last week, and the excellent “Share your Everyday” campaign.

I was fortunate enough to be able to table an early-day motion, which garnered signatures from across the House, recognising the issues and people I have just spoken about. To date, that early-day motion has attracted 44 signatures, and I thank all those hon. Members who supported the motion; hopefully, after this debate there might be more.

Before entering this House, as a biochemist in the NHS, I worked at the forefront of patient care and research and development. The work on arthritis research in the UK is pioneering; it is uncovering new ideas and breakthrough treatments that will end the way in which arthritis limits lives. In the 1990s, it was UK scientists who discovered that a molecule called tumour necrosis factor—one of the cytokines that my hon. Friend the Member for West Ham (Lyn Brown) referred to—was the key molecule causing the destructive autoimmune inflammation of joints that leads to the problems of arthritis. The anti-tumour necrosis factor therapy that they developed has freed millions from rheumatoid arthritis and has also inspired the field of biologics—medicines that use the body’s own molecules to combat diseases. That is something we should be very proud of.

The crucial work of all medical research charities is supported, in the long term, by Government through a real-terms increase in science spending. It is essential that that is continued, and that we back research and development, now and post-Brexit. The Government also need to play their part in supporting medical research funded by charities. The charity research support fund provides an uplift to support charity-funded research in universities and to contribute towards the full economic costs of research—costs such as lighting, heating and maintaining labs. This may seem a minimal ask, but it is the basis and foundation of what scientists, and the laboratories they use, require to continue their vital research.

This joint funding approach ensures that charitable donations are directly invested in research that meets the needs of people with health conditions. In 2013, the Government’s £198 million investment through the charity research support fund leveraged £833 million of investment by charities in English universities. That is a staggering amount; without the charity research support fund, we would have less funding to invest in our leading research. We must commit to securing continual funding for this, to help those with debilitating diseases.

--- Later in debate ---

[David Mowat]

Maybe it was. The hon. Lady also talked about the delays to the start of her treatment and the one-year delay before she got the right drugs, which have been so transformative for her. That is an impressive story.

The hon. Lady also talked about the concerns about the consequences of Brexit. The Government have made it clear that, whatever version of Brexit we end up with, science research will continue to grow in real terms and ongoing scientific programmes will continue. I was a remainer, and we often talk about the money that Europe gives to programmes. She said that £2.5 million was given to a particular programme, which should be seen in the context of the £20 billion that flows in the other direction. The real point is that we understand the need for science and will continue to ensure that that funding happens.

The hon. Member for Neath (Christina Rees) made a good intervention about the consequences of sport and the unpredictable flare-ups that she has. She made the interesting point that arthritis can be invisible for much of the time before flaring up. The right hon. Member for Knowsley (Mr Howarth) is right to remind us of the role of carers. I remind Members that we are putting together a carers strategy, which will focus on unpaid carers in particular. That will come out at the end of this year. We are talking to a number of charities about that because it is important, given the stress and strain on our various systems.

[Mr George Howarth]

I am grateful to the Minister for giving way and for the thoughtful way in which he is responding to the debate. For the sake of completeness, I should say that my impacted disc results from playing rather over-enthusiastic football in the fourth division of the Liverpool Shipping league, which the Minister will know is not a lofty place to play. Unfortunately many of my sliding tackles were badly mistimed, to my detriment.

[David Mowat]

I thank the right hon. Gentleman for his intervention. The fourth division of the Liverpool Shipping league is probably a higher division than I played in during my very short football career.

Due to the time, I will not refer to every speech. The Scottish National party spokesman, the hon. Member for Linlithgow and East Falkirk (Martyn Day), talked about what Scotland is doing on managing obesity and chronic pain. I would like to see England learning more lessons from Scotland’s health system; and, I humbly suggest, vice versa—I also include Wales in that. Health is devolved and we are beginning to do things in different ways. Sometimes things will work well, and sometimes things will work less well. One of the highlights of these debates is to hear what happens in other nations, and those remarks are interesting.

The shadow Minister also gave a good speech. She talked about budgets and health spending, particularly public health spending—she has now been able to tell two Health Ministers about that issue—and it is true that the public health budget was cut. The UK spends above the OECD average on health and adult social care, which has not always been the case. We are not the highest spender—we spend 9.9%, but France and Germany probably spend about one percentage point more—but we are above the OECD average. It matters very much how effectively we spend that money. There are always decisions to be made, and those decisions are sometimes difficult.

What are we doing? I will not be able to answer all the points in great detail other than to say that MSK is a priority because it is so important. MSK is one of the national programmes within NHS England, and in 2013 we appointed a clinical director, a gentleman called Peter Kay, who is running a £5 billion programme covering a number of areas and seven strands of work, which I will briefly run through.

First, we need to ensure good awareness of the signs and symptoms of MSK. That is about public health and things such World Arthritis Day and the UK “Share your Everyday” campaign. It is also about the important Public Health England activities that we have heard about. We ran a successful public health campaign on arthritis last year, and we need to maintain that pressure.

Secondly, we need high-quality clinical guidance to diagnose and manage the disease. Thirdly, we need to provide holistic care, support, and planning in partnership with patients. Fourthly, and this is important, we must spread best practice across the NHS—I would go further and talk about spreading best practice across the health systems of all the Administrations within the UK. Fifthly, we have heard a lot today about the benefits of physical activity for MSK patients, notwithstanding some of the issues experienced by the hon. Member for Neath and the right hon. Member for Knowsley. Fitness and exercise are of course a preventive measure for nearly everything, particularly for MSK diseases.

Penultimately, we need to do more to enable people to remain in work and to return to work. Finally, we need to invest in research. Those are the seven streams of activity, and I will talk a little about the one that has been spoken about most this afternoon, which is what we are doing to keep people in work. As I said, the points about DWP and PIP were well made, and I will see that that is reflected to DWP Ministers.

Hormone Pregnancy Tests

George Howarth Excerpts

Thursday 13th October 2016 Commons Chamber

[Yasmin Qureshi]

I thank the hon. Gentleman. I shall come on to the issue of the independence of the inquiry and the members of the panel.

The Minister indicated that the inquiry would be carried out by an independent panel of experts and said that it would look at everything that had happened and the lessons to be learned. Our present concern is about what happened, who did what and who failed to do what, and what compensation and apology victims will receive.

I shall briefly highlight some of the evidence that we have uncovered, which shows what happened in the 1960s and 1970s.

[Mr George Howarth (Knowsley) (Lab)]

My hon. Friend will be aware that between 1970 and 1971 Finland, Sweden and Norway all banned the use of such treatments. Does she think that there was plenty of indication at that time to give people reason to believe that there was a real problem that needed to be addressed, and is it not timely—I congratulate her—that we are now starting to get the evidence out and have it discussed?

[Yasmin Qureshi]

My right hon. Friend is right. It is amazing how other countries reacted to the evidence. The medical association in the UK was first alerted by Dr Isabel Gal in 1967, a paediatrician who said that her research showed that there was a link between women who had taken the drug and deformities in babies. Her letters and her research were dismissed out of hand by Dr Inman, who headed the regulatory authority. In a letter the authority referred to her in a derogatory manner as a “pathetic eastern European woman”, completely ignoring what she had to say.

We know that other information was available. For example, in February 1969 a committee received a letter from a Dr Dean of the Royal College of General Practitioners, who stated that

“Primodos should be withdrawn from use”.

However, the chief scientist of that committee, Dr Inman, refused to support that and instead wrote to the manufacturer of the drug, Schering, stating that

“the opinion expressed by Dr Dean that Primodos should be withdrawn should not be taken into account. Some women deliberately use excessive doses of Primodos with the intention of ridding themselves of an unwanted pregnancy”.

We have heard that Norway and Sweden banned the drug in 1970.

Again the Committee on Safety of Medicines took no action. Similar notices were issued in Finland, Germany, the USA, Australia, Ireland and the Netherlands, but again the committee took no action. In fact, in 1974 a letter from Schering—from PGT Bye—stated that

“after discussion with the Committee on Safety of Medicines we agreed some time ago not to recommend for the use of pregnancy diagnosis. It is not recommended for early pregnancy since the possibility of virilisation of the female foetus cannot be excluded with certainty”.

Yet still the committee issued no warning.

A further letter stated that

“side effects cannot be reliably excluded”

and that

“Primodos should no longer be recommended for the diagnosis of pregnancy.”

Again the committee said nothing. There are countless such documents. One of our concerns is that panels should have sight of those documents and be given sufficient time to read them, because they must be looked at properly and not ignored.

In 1975 the Committee on Safety of Medicines issued its first warning, stating:

“A number of studies have shown a possible association between Hormone Pregnancy Tests and an increased incidence of congenital abnormalities.”

On 15 October 1975, 41 years ago, Dr Inman wrote:

“We are defenceless in the matter of the eight-year delay”.

In November 1977, eight years after the committee had first been alerted, an adverse reaction leaflet was issued to the medical profession, stating:

“Further results have now been published and the association is confirmed.”

I want to refer briefly to some of the documents, many of which were archived in Berlin and at Kew. Marie Lyon, who chairs the victims association, has painstakingly gathered the documents, and the panel has been informed of them. I want to pay particular tribute to Marie Lyon, who has been doing a considerable amount of work over the past five years. She has spent months and months working on the documents, travelling the length and breadth of the United Kingdom and visiting Germany. She has effectively been working alone, with no support from Government bodies or local authorities. She and the victims association have been on their own. The only support they have had has been from members of the all-party parliamentary group and the Members in the Chamber today who have been fighting their cause. I also want to thank Jason Farrell of Sky News, who has been instrumental in getting some of the documents from Berlin and having them translated.

Translation of the documents is another issue, because many of those that came from Berlin are in German, as is to be expected. I want to know whether all those documents will be translated into English for the panel, because clearly it cannot carry out the inquiry if they are in a different language. We need to know whether all the documents that the victims association has gathered will be looked at and presented to the panel and, if so, in what format? When I used to prepare a large case with thousands of pages, there was a way of presenting the evidence so that the jury could understand it. Will that be done for the inquiry? If not, why not?

The reason we are asking these questions is that I have tried to contact the chair of the panel, Dr Ailsa Gebbie, and written letters to her, asking her to answer numerous questions, and, to be honest, we have not received a satisfactory answer to any of them. If anything, Marie Lyon, who has observer status on the panel, has been put under what I would call a gagging clause, which means she cannot talk about anything, because if she did she would be criminally prosecuted.

One of the things I remember from our discussion with the Minister was that the purpose of the inquiry was to have transparency and openness. We accept that there is obviously a need for a degree of confidentiality when evidence is presented, but we need to know what is going on. We need transparency, because without it, what is the purpose of this?

One thing the Minister promised was that the inquiry would have the victims at its heart. Yet, how have the victims been treated in this inquiry, which has been going for over a year now? I got a letter from one of the victims who turned up, and it is so distressing. The victims were told they could come and speak for a few minutes. Some travelled for five or six hours across the country to get to the hearing. They were promised at least 15-minute slots, but some were given three minutes or five minutes. Nobody even spoke to them properly; they were just asked to get on with it and to say what they had to say.

Fortunately, the victims who gave evidence were not subject to the gagging clause, so we were able to find out a little about what happened on the one day that seems to have been allocated for the victims. The panel heard from a few of them, but it did not ask them any questions. They were not cross-examined; they were not asked for anything—they just had three minutes. One lady said she was devastated; it had taken her five hours to drive there, and she was given three minutes. The victims said they were sitting so far from the panel, where the microphones were, that they were not even sure the panel was hearing what they had to say.

How can an inquiry that has victims at its heart not take more than a day to listen to them and, when they turn up, give them just three minutes? That is why we are having this debate. Given the way this inquiry is going, I do not think that any of the Members of Parliament who are supporting and assisting the victims have any confidence in it. As in the Hillsborough inquiry and the sexual abuse inquiry, everybody accepts that it is all about the victims; it is not about protecting regulatory bodies or the scientific community—it is about the people who have been affected.

There is another thing the Minister said. Obviously, it goes without saying that any inquiry must be independent—the panel members must be independent. When I raised that in a letter to Dr Ailsa Gebbie, the chair, she said, “Well, we got the expert panel members just to declare that they had nothing to declare.” There was no independent vetting or investigation into the background of any of these people. We have to understand this: people in the medical community, scientists and people in the pharmaceutical companies often work with each other. People have been advisers or consultants to somebody, or they have gone from the pharmaceutical companies into medicine or hospitals. There is a community of people who are linked.

We do not have the resources, but our basic research has shown that one of the panel members, Laura Yates, put on her social media that she does not think that Primodos caused any defect. How can this person be part of the panel? Then we have information about Doctor Schaefer. This man has worked with the company concerned, so he is directly linked with Schering—and he is still on the panel. That is two people, just from our basic inquiry. We want to know from the Minister whether the panel members will be properly vetted to see whether they are really independent and to find out about their connections. Again, without that, we will not have any faith in the inquiry.

We have asked the inquiry how long it will go on and how many sessions it will hold. There has been no response—nothing. We have tried to find out for well over a year, but nobody knows what on earth is going on with this inquiry. That leads to another question for the Minister. How long is the inquiry going to carry on? How many days have been set aside for it? How many hours have been spent on the inquiry to date?

In addition, how have the experts been chosen? We do not even know by what methodology they have been chosen. There are about 15 people on the panel, but does it need that many? Who are they, and how relevant is their experience to what they are looking at?

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health (David Mowat)]

May I just say at the outset that nobody in the Government has any interest other than in getting to the truth in this matter? We are as keen as the people who have spoken today, and indeed the families that are watching us, to make sure that we do that, and there is a process that is to be followed to make that happen. We have heard some strong words today: “establishment whitewash”, “sham inquiry” and “a blanket over the issues”. I say again: nobody on the Government side of the House has any interest in anything other than getting to the truth, and the process that was put in place two years ago had that at its heart.

Let me join others in congratulating the hon. Members for Bolton South East (Yasmin Qureshi) and for Livingston (Hannah Bardell) on leading the charge on this, not just today, but in terms of the APPG and making sure that this issue is very high on the Government’s agenda. It is massively important that those who feel their lives have been adversely affected by drugs, albeit 40 or 50 years ago, see that processes are in place to make sure that we do what we can.

I would also like to pay tribute from the Government side to the Association for Children Damaged by Hormone Pregnancy Tests, and particularly to Marie Lyon for the work that she has done and continues to do—and should continue to do until we get to the truth of this matter.

I am going to talk in some detail about the progress on the inquiry, but it was very clear, as I listened to the debate, that, at the very least, the association does not have confidence in the work of the inquiry, and that is unsatisfactory. I have heard people talking about letters being unanswered and all that goes with that, and that is unacceptable. I make a commitment at the start to the association, or the APPG, that one of the things that should come right out of what we are talking about today is a letter from them, in as much detail as they want it to be, raising as many concerns as they feel they have about the details of the inquiry—a lot of detailed points have been made, which I will not be able to answer today. That letter will be answered in detail, and after that we should have a meeting to make sure that everyone is content with the direction in which we are going.

[Mr George Howarth]

I am grateful to the Minister for his offer. Does he accept that part of the problem is that if people do not have confidence in the process and do not feel that it is being conducted in a transparent way— there is evidence that that is the case—they will say that the inquiry is likely to be a whitewash? He needs to reassure not just the families and my hon. Friends, but everybody concerned with the inquiry that the process will be transparent and open. In those circumstances, people would have more confidence in it.

[David Mowat]

I accept that, which is why I have made the offer. I guess the caveat is that, in the end, science will play a big part in getting to where we need to be. The science will find its own path, and I want to talk a little about how we are trying to achieve that.

As hon. Members have said, two years ago my hon. Friend the Member for Mid Norfolk (George Freeman), who was then the Minister for Life Sciences, established an inquiry that, at the time, was committed to having an independent review of the evidence and to attempting to find a scientific link between the hormone pregnancy test—in particular, Primodos—and the adverse effects on pregnancy and all that goes with it. It is worth saying at this point that, as hon. Members have said, this is an international issue that has been around for 40 to 50 years. We are the only country to have set up such an inquiry, and the only one to have attempted to find a scientific route to the truth in this way.

--- Later in debate ---

[David Mowat]

I said at the start of my remarks that the learning point I have taken from this debate is that, whatever we think about the truth, the science and whether we are doing the right thing, the families are not happy. I also said that we will do what we can to amend that.

As well as that, Members on both sides of the House need to accept that we need to get to the scientific truth. In order to do that, there needs to be a scientific process. That has to happen and that is why some of this is time-consuming and difficult, even though we wish that it was not.

[Mr George Howarth]

The Minister is being generous in giving way. I am not sure that the terminology he is using is necessarily suitable. I do not understand this to be a scientific process per se. I understand it to be an informed judgment about the available evidence and, understandably, that is best conducted by scientists. I think he was a lawyer in a previous existence, so he will understand the difference between the two approaches.

[David Mowat]

I am guilty of many things, but I have never been a lawyer. However, in case I was not clear, I understand the difference between the two processes and accept the distinction that the right hon. Gentleman makes. The point I would make again, however, is that the panel has 14 members who have been chosen for particular skills in the issues involved, plus lay members who are not scientists.

NHS Sustainability and Transformation Plans

George Howarth Excerpts

Wednesday 14th September 2016 Commons Chamber

[Margaret Greenwood (Wirral West) (Lab)]

To understand the significance of the Government’s creation of the sustainability and transformation plans, we need to be aware of what has gone before and consider the extent of the financial crisis. In 2012, the coalition Government passed the Health and Social Care Act, paving the way for the privatisation of the national health service and removing the duty of the Secretary of State to provide and secure a comprehensive health service in England. I believe the STPs are a key part of the Government’s plan to drive through privatisation.

[Mr George Howarth (Knowsley) (Lab)]

Does my hon. Friend agree that the concern in our part of the world is that the word “sustainability” is all about financial sustainability, not the sustainability of services?

[Margaret Greenwood]

My right hon. Friend has hit the nail on the head.

Monday’s Liverpool Echo leaked some of the detail of Merseyside and Cheshire’s STP, reporting an anticipated £1 billion deficit by 2021. The STP talks about a

“need to reduce demand, reduce unwarranted variation and reduce cost.”

Those are all very nice ambitions, but the idea of trying to reduce demand just to plug a £1 billion funding gap is, frankly, the wrong way to deal with planning a sensible health service. The STP also says that there is an “appetite” for hospital reconfiguration—an appetite among whom, one might ask—as the existing set-up is unaffordable. It says there will be a requirement for

“our hospitals to be reconfigured, consolidated with less sites and clinicians and consultants working increasingly in new emerging networks.”

There is a problem with commas in the document, so who knows what it means. In other words, there will be cuts to staff and cuts to hospitals.