Young-onset Parkinson’s Disease

Nick Thomas-Symonds Excerpts

Monday 6th March 2017 Commons Chamber

[Nick Thomas-Symonds (Torfaen) (Lab)]

During the 2015 general election campaign, I attended a concert in my constituency in aid of Parkinson’s. It was organised by a constituent of mine, Len Burbidge, and I want to pay tribute to the tremendous work that Len does on this issue locally. That night, I signed a pledge to raise awareness of Parkinson’s in this House, should I be elected, and I have sought to do that in parliamentary debates and as a member of the all-party group on Parkinson’s. I pay tribute to the group’s chair, my hon. Friend the Member for Bridgend (Mrs Moon), for the work that she does, and to the work that is done for the group in the other place by Baroness Gale of Blaenrhondda.

I am delighted to have secured the debate this evening, particularly because it is now 200 years since Dr James Parkinson published his famous 1817 essay “An Essay on the Shaking Palsy”. Some 60 years later, a French doctor, Jean-Martin Charcot, spoke about “la maladie de Parkinson”, from which we have coined the term “Parkinson’s disease” to describe the condition. According to figures from Parkinson’s UK, some 120,000 people are affected by the condition in the UK today. We know about the three principal symptoms—the tremor, the muscle stiffness and the slowness of movement—but unfortunately there is still no cure 200 years later.

When I talk about the number of people affected by the condition, I must point out that the data available on those with Parkinson’s are perhaps not as accurate as we would like. We know that several thousand people of working age have the condition. I want to pay tribute to Gaynor Edwards from the charity Spotlight YOPD for the work that she has done to raise the profile of this issue. She has guesstimated that there are 6,500 people affected who are under the age of 50, but it would be a significant step forward if we could accurately estimate not only the prevalence of Parkinson’s in the population as a whole, but the number of people of working age who have the condition. I would be grateful to the Minister for some assurance that we can look at how the data are collected.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on bringing this matter to the House. We have 4,000 sufferers in Northern Ireland, one in 20 of whom was diagnosed with Parkinson’s when they were under the age of 60—in other words, still of working age. He spoke about the importance of finding a cure, but in order to do so, we need a research programme. Does he agree that the Government should be placing more emphasis on early diagnosis and finding a cure?

[Nick Thomas-Symonds]

I entirely agree with the hon. Gentleman.

I have been provided with a number of emails by the charity Spotlight YOPD, and I have permission to use them in this debate. Interestingly, one of those contributions is from someone with Parkinson’s who is based in Edinburgh. They say:

“My main concern is the lack of clinical trials to participate in, compared to many other conditions, there’s hardly anything at all going on for PD.”

I will talk in a moment about the care that people receive, but I agree with the hon. Gentleman that research into a cure is absolutely central to this debate.

I want to talk about a constituent of mine, Hayley Huxley, to whom I have been speaking in recent weeks. She was diagnosed with Parkinson’s at the age of 25. She is now 30 and has two young children. I want to reflect on what she set out in an email to me, because it is indicative of what people go through. She says:

“It all started when I was 24. I went back to work after maternity leave on my first child and noticed I couldn’t use my right hand properly to write. I went to the doctors 3 times and they just put it down to carrying a car seat, pulled muscle, etc. The 4th time I went I got referred to a specialist and went for tests”,

and she was diagnosed at 25.

Hayley speaks movingly of the challenges that she has faced, such as working part time due to fatigue and having to

“fight my way through the PIP assessments”.

In the end, she was able to get the appropriate number of points. She also speaks about access to a neurologist, saying that she has not seen one since she was diagnosed five years ago. Indeed, she has not seen her Parkinson’s nurse since July 2015. She speaks about managing her medication, going through childbirth without taking medication for eight months, the rigidity in her right arm and leg, and the restless leg that she gets.

[Mrs Madeleine Moon (Bridgend) (Lab)]

Is my hon. Friend aware of the Parkinson’s KinetiGraph watch? It is new on the market and was developed by Global Kinetics Corporation. It monitors the medication taken by a Parkinson’s patient and will send a message over the internet to a consultant with information about whether the medication is at the right level and has been taken at the right time, thereby enabling people to stay in work longer and to control their tremors much better.

[Nick Thomas-Symonds]

I am grateful to my hon. Friend for that point. The device sounds remarkable and could assist people with the condition.

Hayley spoke about the restless leg she experiences if her medication is not taken at the right time or if she is under stress. The way in which Hayley has dealt with the condition is inspirational. When I saw her yesterday in advance of this debate, she said that while those who fit into what is called the young-onset group have particular needs, there is a collective sense of need for everyone with the condition. The photographer who was with us yesterday, Ron McCann, also has Parkinson’s and is aged 69. Over the course of the weekend, I was contacted on social media by a member of the male voice choir in my hometown of Blaenavon, who spoke about a chorister in his 80s who is battling the condition and has found that singing has assisted him.

While there are issues that unite all with the condition, including access to the drug Duodopa, which was the subject of a recent debate in Parliament, those who are diagnosed at a younger age have specific needs. The first issue is with being diagnosed in the first place, because the condition can go undiagnosed. Those who have contacted Spotlight YOPD talk movingly about what happens at that moment of diagnosis. Keith from Newark says:

“Parkinson’s for younger people (under 50) is a different kettle of fish...It completely changes your life but you don’t know at the time and no one actually tells you.”

Gaynor from Rye says:

“I’ve never felt quite so lonely as when I was diagnosed. Mourning for the future I thought I had—suddenly old before my time with a fear of dependency—and no one there to gather me up; no one to depend on.”

Jordan, 21, an MSc student in Liverpool, says that

“the GP kept saying, ‘He’s too young, he’s too young,’ and said it was a psychological problem.”

Even when the diagnosis is established, there then comes a whole set of new challenges. On top of dealing with the condition, there are all the pressures of family and working life.

[Andrew Selous (South West Bedfordshire) (Con)]

I am a huge admirer of the hon. Gentleman’s speech and I commend him on bringing this matter before the House. Does he agree that cases such as those that he has outlined can often be helped if there is a local support group? Such groups provide a lot of information and can effectively lobby local health services on matters such as Parkinson’s nurses? Would he recommend the setting up of such groups around the country?

[Nick Thomas-Symonds]

I entirely agree with the hon. Gentleman that local support groups are hugely important, which leads me on to the mental health issues that often come with Parkinson’s. Although access to a neurologist is highly important, we must not neglect access to mental health support.

Prescription charges remain a bone of contention in England. Pre-payment certificates are available to reduce costs, but there is still a cost. England could do with following the lead set by the Welsh Government in 2007 by abolishing prescription charges altogether.

There are also issues of engagement with medical services. Again, I can refer to specific cases. Jon, a father of three who was diagnosed at the age of 49, says:

“People with Parkinson’s can often have problems in hospital.”

Why? People with Parkinson’s are often deprived of their medication because, obviously, they hand in their medication when they go into hospital, yet maintaining a regular medication regime is very important and the person themselves is often best placed to do that.

I spoke a moment or two ago about access to neurological services. Alison, a mother of three based in Cheltenham, says:

“I feel let down by an NHS system that offers me one 10 minute appointment with a neurologist each year and I have to chase this to get it.”

Neurological services clearly need to be more accessible than that.

I do not make my next point in an ideological way, and I am pleased that the former Minister with responsibility for disabled people, the hon. Member for North Swindon (Justin Tomlinson), is in the Chamber. Irrespective of political views, I want to address the efficiency of the social security system as it actually works. I pay tribute to the work of Parkinson’s UK, and particularly to that of Natasha Burgess. On employment and support allowance, for example, which will involve a work capability assessment, the problem with something like Parkinson’s is that it is a variable condition.

[Mrs Moon]

Unpredictable.

--- Later in debate ---

[Nick Thomas-Symonds]

Precisely. A work capability assessment might not be the best way to assess people with a fluctuating condition. Additionally, on the personal independence payment, there are far too many people at my surgeries who end up having to go all the way to a tribunal to be awarded what they should have been given in the first place.

[Jessica Morden (Newport East) (Lab)]

My hon. Friend is making an excellent case. The Minister for Disabled People, Health and Work recently said during a debate that she would be talking to the Treasury and Motability about letting PIP claimants keep their vehicle while they appeal decisions that have gone against them. The removal of Motability vehicles has affected people with young-onset Parkinson’s. Does my hon. Friend agree that we deserve to hear what progress has been made on that issue?

[Nick Thomas-Symonds]

I agree entirely with my hon. Friend. That point is particularly pertinent because of the number of people who are succeeding on appeal.

I have an email from Phil from Kent, who was diagnosed with Parkinson’s at the age of 45. He says:

“In…2015 I was awarded 17 points (the Higher Rate) for the Daily Living Component and 10 points…for the Mobility Component of Personal Independence Payment.”

He felt that that was accurate, but the assessment was downgraded when he was seen a year later. He has an appeal ongoing, but he simply says this:

“I want the DWP to understand that Parkinson’s disease is a degenerative condition…It does not get better!”

That is precisely right.

The Government have the laudable aim of halving the disability employment gap.

[Justin Tomlinson (North Swindon) (Con)]

Before the hon. Gentleman comes off the subject of PIP, I wish to pay tribute. He is making a really important speech, and it is a real credit to Parkinson’s UK, which was one of the most engaged groups during my time as Minister for disabled people—I thank the hon. Member for Bridgend (Mrs Moon) for arranging the initial introduction. I urge the Minister to take the opportunity to meet Opposition Members as soon as possible to explore all these constructive options, which are so typical of the hon. Gentleman. I also wish to thank my local Parkinson’s UK members, who are now holding regular coffee mornings in my office as a way to engage, to share best practice and to continue to highlight the improvements that we all, collectively, need to make.

[Nick Thomas-Symonds]

I am grateful for that intervention from the former Minister. He takes a constructive approach, for which I am very grateful.

The aim of halving the disability employment gap is laudable, but I have a slight concern, in that we also have to recognise that people with Parkinson’s will need support when they leave work, at which point returning will, sadly, not always be a realistic option.

As I sum up, I want to speak about the people who battle this condition. Pete from Brighton says:

“At heart…we YOP suffer a triple indignity: the disease itself, with all that it entails; our not being considered disabled enough by the system; and the lack of awareness ensuring that we are considered to be practically useless by society at large.”

Karen from Birmingham says:

“my medication is not helping me through the night and sleeping is impossible. I am literally paralysed during the night.”

We should not forget the daily battle that people with Parkinson’s face, but nor should we forget where we started this debate—with Dr James Parkinson and that essay of 200 years ago. In addition to having medical expertise, he was also something of a political activist, writing leaflets under the pseudonym “Old Hubert” and speaking about those who lived in poverty. He argued for political reform, and I am convinced that if he was still here today, he would be speaking up for all those who have Parkinson’s, who suffer and who battle with this condition every day. I hope that this debate has at least gone some way to raising awareness of the particular problems that people face.

--- Later in debate ---

[David Mowat]

In principle, I would be delighted to come to Swindon, or my hon. Friend could join the meeting with Parkinson’s UK. I am sure there is a way forward.

[Nick Thomas-Symonds]

It would also be extremely useful for the Minister to facilitate a meeting with another charity called Spotlight YOPD, which has done tremendous work in this area.

[David Mowat]

I heard that charity mentioned and yes, that would of course be a sensible thing to do; the focus of this debate is on YOPD, so that would be appropriate.

There is an issue with GP awareness and diagnosis, partly because there is sometimes an assumption that if someone is young and has dizziness, aching muscles and some of the other early symptoms, those can be symptomatic of more benign conditions, and it is genuinely quite hard to diagnose young-onset Parkinson’s disease. It is important to note that the Royal College of General Practitioners’ neurology training emphasises that all GPs must have a knowledge of the epidemiology of Parkinson’s. The applied knowledge test, which all GPs, wherever they come from, have to pass before they can be a GP, has modules on Parkinson’s and the fact that it can potentially come to people before they are 50 years old, even though it does not usually do so. It is important that we continue to focus on that.

The National Institute for Health and Care Excellence has guidelines on Parkinson’s. Most relevant is the guideline on the best practice on the diagnosis and management of the disease. The draft is currently out for public consultation and will be updated and reissued in April. That guideline also emphasises the fact that early onset is possible and that if patients present with stiffness and slowness of movement, Parkinson’s needs to be considered, because quite often it still is not.

A second NICE guideline, which is also being worked on, is on the more general theme of suspected neurological conditions, with a particular focus on people outside the normal age ranges presenting with symptoms. That applies to children, young people and adults. Such a focus is potentially useful in the identification of early-onset Parkinson’s.

Once the condition is diagnosed, it is obviously important to start treatment. That tends to imply, in England at least, referring a person to one of the 25 neurological centres around the country. A management plan should be put in place by a multi-disciplinary team, consisting of neurologists, neuro-surgeons, nurses and psychologists. Once that plan is in place, treatment can take place through normal primary and secondary care pathways.

[Nick Thomas-Symonds]

The Minister mentioned psychologists in that list. Does he agree that mental health is a vital part of that package?

[David Mowat]

I heard the hon. Gentleman say that in his speech, and I agree with him. We know that we have some work to do in our health system generally in getting mental health to catch up with the rest of the ways that we treat health. I use the phrase “parity of esteem”, and that is something that must happen. Younger people with Parkinson’s are unlikely to be in a major support group of others who have the disease at their sort of age. They can feel lonely, isolated and all that goes with that. In particular, the hon. Gentleman mentioned Hayley and her young family. Yes, he is absolutely right to emphasise that issue, as we do need to have much more mental health provision in our GP practices. We are determined to achieve that by 2020, with 3,000 mental health therapists in GP practices in England.

The hon. Gentleman mentioned the workforce and 10-minute appointments. We have increased the number of neurologists working in NHS England by something like 30% since 2010. The figure has increased to 1,300, so something like 300 more neurologists are needed in NHS England. As the incidence of neurological conditions continues to increase—Parkinson’s will continue to increase as the population ages—we will need to continue with that expansion. That is clearly a priority.

I wish briefly to talk about the new neurology advisory group, which was set up in September 2016 and is led by Professor Adrian Williams, a neurologist. A member of that group is Steve Ford from Parkinson’s UK. The group’s role is to better align services across the country. Currently, there is a disparity in treatment between different clinical commissioning groups and different GP practices. To an extent, that disparity is inevitable, but we need to do what we can to minimise it, and that group will be looking to do that. It will also be responsible for working as part of a neurology intelligence network, which is all about getting data. The very first challenge from the hon. Gentleman was that the figures that I had quoted and that he had quoted were all estimates. We do not gather data in the format that can be used. The estimates came from a report of Parkinson’s UK, and they were based on 2009 data. We need to do much better than that. It is only by having more reliable data that we can track the way in which the disease is developing and can ensure that we have adequate and effective treatments and networks in place.

The hon. Member for Strangford (Jim Shannon) mentioned research. Yes, in the end, research will help us to find a cure. We spend something like £1 billion a year through the National Institute of Health Research. Of that, the spend on neurology has increased over five years from £30 million—it is not the biggest area—to something like £55 million this year. That is something that we should continue to press for, and I am sure that both the hon. Gentleman and Parkinson’s UK will do that.

I agree with the thrust of what the hon. Gentleman said about the DWP. Indeed, the Government’s Green Paper, which was published in October 2016, talked about removing continuous assessment processes for people with progressive diseases, such as Parkinson’s. I understand that the DWP is working towards developing the criteria for switching off assessments, and I think that he and I would both agree that the sooner that is applied in this case, the better.

In conclusion, early-onset Parkinson’s is a very tough condition that around 5,000 or 6,000 people across the country have. It is tough to diagnose and there is no cure, although it can be partially managed. I congratulate the hon. Member for Torfaen again on raising awareness of the condition, both today and over the past year or so through the campaign. I also thank Parkinson’s UK for the work it does. I hope that this discussion has been helpful. I would be delighted to meet the hon. Gentleman, the hon. Member for Bridgend, Parkinson’s UK and perhaps even my hon. Friend the Member for North Swindon to talk about how we can take this forward.

Question put and agreed to.

Agenda for Change: NHS Pay Restraint

Nick Thomas-Symonds Excerpts

Monday 30th January 2017 Westminster Hall

[Catherine McKinnell]

I absolutely agree. It is hard to emphasise enough my support for people working across the NHS in increasingly challenging circumstances, without whom our health service would, quite frankly, cease to exist.

[Nick Thomas-Symonds (Torfaen) (Lab)]

The way to show respect for our nurses and other NHS staff is to act now to remove the cap, as has been described, and listen to the independent pay review body.

[Catherine McKinnell]

My hon. Friend makes an important point. It is not enough for us to state our support for our NHS workers; we must show it through real action.

Breast Cancer Drugs

Nick Thomas-Symonds Excerpts

Thursday 26th January 2017 Commons Chamber

[Siobhain McDonagh]

Breast cancer knows no boundaries, whether class, social or geographic. Anything that reduces access to better forms of treatment is detrimental.

The ability to lead an enriched and longer life as a result of medical advances should not be limited only to those who can afford private healthcare. Those advances should be accessible to us all. This debate will focus particularly on the provision of the breast cancer drug Kadcyla, which is under threat. Most Members will be aware of the lease of life that Kadcyla has brought to thousands of women in England with incurable secondary breast cancer. These women rely on Kadcyla to enrich their lives and to give them extra precious years to live. Indeed, in many ways it is a revolutionary drug. By targeting cancer cells directly, it helps to reduce the number of side effects, boosting women’s quality of life immeasurably. Members who have heard these women talk about their experiences will be humbled to learn of the distress and despair that they face as a result of NICE’s decision to provisionally reject the future use of Kadcyla on the NHS.

Today we are all supporting Breast Cancer Now’s “Keep Kadcyla” campaign to encourage NICE to reverse its decision and enable continued access to the drug, which both improves the quality of life and extends the lives of thousands of women in this country, on the NHS. Since NICE’s decision was announced at the end of December, thousands of people throughout the country have had their views heard. They have signed the petition and contacted their local MPs to ask that we do not give up on women, on the children who are dependent on mothers, and on the families who want that precious extra time with their loved ones. That is why we are all here today: to raise our collective voice in support of these women and defend the treatment that allows them to live their lives.

The focus of much of what I have to say today will be on Kadcyla, but we also need to consider other specific breast cancer drugs, as well as the broader issue of how decisions about access to treatment are made. Unfortunately, we are yet to see any improvements in access to off-patent drugs, some of which can prevent the development of certain cancers, thereby saving countless lives, as well as saving the NHS a great deal of money. Just a few months ago, the front pages of national newspapers highlighted the poor access to vital bisphosphonate drugs, which can prevent women from developing secondary cancer, yet the Government have barely acknowledged the problem of access to such treatment. I look forward to hearing from the Minister about when we can expect tangible results regarding access to off-patent drugs, including bisphosphonates. To be clear, many of the women who today owe their lives to Kadcyla might never have developed secondary breast cancer had they had access to bisphosphonate drugs in the first place.

[Nick Thomas-Symonds (Torfaen) (Lab)]

I will discuss off-patent drugs in my own speech, but on bisphosphonates, which are in the category of repurposed drugs, is my hon. Friend as concerned as I am about the results of the UK-wide survey undertaken by the UK Breast Cancer Group in March last year, which showed that currently only 24% of breast cancer clinicians are offering bisphosphonates to patients? That is something that the Government could urgently address.

[Siobhain McDonagh]

I completely agree with my hon. Friend and hope to say a little more about that later in my speech.

This debate is about not just Kadcyla, but the lives of the thousands of women who rely on it to survive, so I want to share the words and experiences of two of my friends whose lives have been transformed by having access to Kadcyla. One of my friends is present today—I went to primary school with her, but I shall not tell the House just how many years ago that might have been. Her name is Samantha, and she said:

“When I got the breast cancer diagnosis, I glibly thought—oh it’s OK I’ll get cured, but sadly about 18 months ago I found out that this wasn’t the case and my cancer had spread to my liver. And that’s when I really knew that my cancer meant business!

And that is where Kadcyla comes in. You see for breast cancer, although I coped and kept going with surgery, chemo and radiotherapy, it was grim. I worked a bit, but regular chemotherapy is not a doddle. Exhaustion and hair loss is just the least of it.

Putting on a brave face and wearing a wig is just a surface issue, getting up vomiting and going to work to deal with the VAT is about the hardest thing I have ever done. It wasn’t simply because I don’t have enough sick pay at work to cover my mortgage, I actually like work—work allows me to make my contribution, and I think that’s pretty near the most important thing, making my life make a difference. And Kadcyla? Well that means that my life isn’t over, it really gives me hope.

There is a big hole where my 45 mm tumour used to be in my liver, and scar tissue and other bits, but I am cancer free without having to take another year off my life. My work is precious; I have kept the business going. Eight people are employed, because I could keep going, and Kadcyla made it possible for me.”

--- Later in debate ---

[Nick Thomas-Symonds (Torfaen) (Lab)]

I begin by thanking the Backbench Business Committee for selecting this very important topic for debate this afternoon. I pay tribute to my hon. Friend the Member for Mitcham and Morden (Siobhain McDonagh) for the passionate but very thoughtful way in which she introduced the debate. I endorse everything that she said. On the drug Kadcyla, she said, quite pithily, that, first, it works and, secondly, it has far fewer side effects than many other cancer drugs. I was also very proud to have backed the “43p a day” campaign that she mentioned.

I declare an interest as the chair of the all-party group on off-patent drugs and should also say that one of my first actions as a Member of this House in 2015 was to become a breast cancer ambassador. I was very proud to do that, as the person who inspired me to come into politics, my grandmother, died of the disease some years ago.

I was lucky enough in my early months in this House to be drawn in the ballot for a private Member’s Bill. I introduced the Off-patent Drugs Bill, and although it was talked out in quite controversial circumstances on 6 November 2015, I was none the less pleased after that to work on a cross-party basis to achieve legislative progress. I pay tribute to the hon. Members for Central Ayrshire (Dr Whitford), for Bury St Edmunds (Jo Churchill) and for Daventry (Chris Heaton-Harris), and to the former Minister for Life Sciences, the hon. Member for Mid Norfolk (George Freeman), for the work that was done in those months to make legislative changes which were incorporated in the Access to Medical Treatments (Innovation) Bill, which received Royal Assent in March last year.

I want to come to the pledges that were made on 29 January 2016 and how things have moved forward since. I say to the Minister that in setting out a number of questions about this matter, I do not necessarily expect them all to be answered in detail in her closing remarks. If there are aspects that she feels she cannot answer in detail, I would be grateful if she wrote to me about them after the debate.

On 29 January 2016, I and others in the House tabled a package of amendments to the Access to Medical Treatments (Innovation) Bill. Some were substantial and went into the Bill. Others were probing amendments designed to extract the promises that I have talked about. The then Minister for Life Sciences said:

“Broadly, the intention of the package of amendments is to introduce off-label repurposed medicines in the Bill, and to put it four square at the heart of the agenda.”

That is precisely what we sought to do that day. He added:

“I wholeheartedly supported the intention of his Bill and its predecessor, but not the mechanism. We now have a mechanism that will work”—

we had spoken that day about the mechanism.

One of the amendments requested an action plan, but the Minister decided he did not want that on the face of the Bill. However, he said:

“let me set out my commitment and that of the Government to pursuing this agenda with time and rigour.” —[Official Report, 29 January 2016; Vol. 605, c. 543.]

[Dr Huq]

I remember very well my hon. Friend’s Bill and the shameful way it was talked out by the professional filibusterers on the Government Benches. However, does he not agree that any action plan needs to look at these things in the round? It should look at the poor post-diagnosis support and information that patients get across other types of cancer, not just breast cancer. It should also look at the limited availability of the effective drugs we have talked about, which do not have side effects, and at the fact that drugs have been de-listed from the Cancer Drugs Fund.

[Nick Thomas-Symonds]

I certainly agree that the pathway has to be comprehensive, and I will come back to it in a moment.

In addition that day, the then Minister for Life Sciences said he would

“explore mechanisms for ensuring NICE can look at evidence and develop evidence-based guidance on off-label medicines, so that doctors are aware of which drugs are being used in an off-label indication…NICE is now looking at ways to collect evidence on repurposed medicines.”

He spoke about the “British National Formulary”, and I am pleased about the progress that has been made on it, which I will come back to in a moment.

We proposed—this would have applied to NHS England—that there should be a new system of national commissioning for repurposed drugs. Again, our amendment was not accepted, but this pledge was given:

“The NHS is hungry to look at all options for promoting off-label and repurposed drug use.” —[Official Report, 29 January 2016; Vol. 605, c. 544-45.]

I hope that that pledge can be repeated by the Minister at the Dispatch Box today. There was also a commitment to consult all relevant stakeholders. Again, I would hope that that is fairly uncontroversial and can be repeated.

Let me come now to where we have got to. When I intervened on my hon. Friend the Member for Mitcham and Morden, I quoted the worrying statistic about bisphosphonates, which really do provide a case in point. They are used to treat osteoporosis, but they are very effective in their secondary form—the repurposed form—where someone has primary breast cancer, and they certainly help to prevent that from spreading to the bone. The statistic that only 24% of clinicians are prescribing bisphosphonates is very worrying, and it does need to be addressed, because there should be no barrier in the system to their being far more widely prescribed than they are.

Let me come to the working group. I understand that it will conclude at the end of next month. I am very grateful for the fact that I will be meeting officials from the Pharmacy and Medicines Directorate in the next few weeks to discuss this issue. However, if there is to be a pathway, I would appreciate it if the Minister was prepared to share it with me in draft form before that meeting, so that comments could be made on it, particularly going back to the pledges made last year.

The “British National Formulary” has begun work. Indeed, I looked up bisphosphonates specifically on BNF Online before I came to the debate. What makes the 24% statistic even more worrying is that BNF Online says:

“The use of bisphosphonates in patients with metastatic breast cancer may reduce pain and prevent skeletal complications of bone metastases.”

That is there already—it is in the prescriber’s bible, if you like—so the Minister really should focus on why it is not filtering through the system in the way that it should.

In addition, there is a pilot licensing scheme that brings together medical research charities and generics manufacturers to license off-patent drugs for their new purposes. If the Minister could comment on whether she is looking for that to become a fully fledged scheme, that would be helpful.

The scheme is an interesting development, because my Bill, in its original form, would actually have put a duty on the Secretary of State for Health to seek licences for drugs in their new indications, and that was the bone of contention between me and the then Minister, who thought that it was too onerous for the Secretary of State to have that duty.

Looking back at that debate, I think the other interesting thing is that a point was made about the EU’s licensing scheme. It was said that any changes could run a coach and horses through that scheme, but given that we will not be members of the European Union by the end of this Parliament, I would be interested to hear how the Minister thinks the end of the Brexit process will affect this issue. If the European licensing scheme was seen by the Minister at the time as posing something of a problem, perhaps she can tell us if she will consider whether the pilot licensing scheme can now become fully fledged and how she sees things developing here in the UK without the European scheme.

I appreciate that I have put a lot of points to the Minister. As I said, I am perfectly happy for her to write to me about them. However, we should not forget the difference that this off-patent drugs agenda can make to people’s lives. Those who face this disease show incredible bravery. For example, we have my hon. Friend the Member for Bristol West (Thangam Debbonaire) in the Chamber with us, and Bonnie Fox, a constituent of the hon. Member for Croydon South (Chris Philp), is in the Public Gallery. We in this House, as legislators, owe a duty to all who suffer from this terrible disease to take all possible steps to make what are extraordinarily cheap drugs as readily available throughout our country as possible.

--- Later in debate ---

[Mike Kane (Wythenshawe and Sale East) (Lab)]

I congratulate my hon. Friend the Member for Mitcham and Morden (Siobhain McDonagh) on securing this debate. She made an extraordinarily powerful and emotive speech. I join her in wishing everybody who is here today in the Public Gallery and everybody who is watching this debate at home all the very best for the future. It is also a pleasure to follow the hon. Member for Milton Keynes South (Iain Stewart), who made a very powerful speech citing the personal testimony of his constituent, whose case he argued eloquently. My hon. Friend the Member for Torfaen (Nick Thomas-Symonds) spoke eloquently about his grandmother being his inspiration for going into politics, and her dying of the disease. We come into politics for many different reasons, the profession of public pain being one. Nye Bevan did not create the NHS in 1948; he created it much earlier when his father died of pneumoconiosis in his arms before the time of the NHS. I hope that I can pronounce the drugs that I am going to mention just as well as the hon. Member for Portsmouth South (Mrs Drummond) did.

We have heard lots of statistics today. Stats, in themselves, are shocking, and it is also important to remind ourselves that behind every statistic there is a human story. The lives of women, all too often young women and mothers, are being cut cruelly short. We have heard many important interventions about access to breast cancer drugs for treatment of secondary breast cancer. At the heart of the motion is also the issue of how we can improve access to innovative new breast cancer drugs and off-patent drugs used for breast cancer. The use of such drugs relates not only to the treatment of breast cancer but to its prevention. I am immensely proud of the fact that my constituency is home to the Nightingale centre— Europe’s first breast cancer prevention centre—and the charity Prevent Breast Cancer. I am a Mancunian MP, so my constituency also benefits from close proximity to the Christie hospital, the largest single-site cancer centre in Europe, treating more than 44,000 patients a year.

The Nightingale centre opened at University Hospital of South Manchester—Wythenshawe hospital—in July 2007. It offers state-of-the-art diagnostic and treatment services to women and men with breast cancer and co-ordinates the NHS breast screening programme for the entire Greater Manchester area. It also provides training facilities aimed at addressing the shortage of breast cancer specialists, and it houses many of the Prevent Breast Cancer researchers who are looking at ways to predict and prevent breast cancer.

In the Prevent Breast Cancer research unit, several drugs that are now out of patent are being repurposed for preventing cancer from coming back. Women with a family history or other factors that make them high risk are known to benefit from these drugs, which prevent the disease. But women in that position find it difficult to obtain these inexpensive, tried-and-tested drugs because they are currently not listed in the “British National Formulary” as specifically licensed for the new purpose of prevention, despite successful clinical trials. There are currently three drugs in that situation: Tamoxifen, Raloxifene and Anastrozole.

[Nick Thomas-Symonds]

Will my hon. Friend give way?

[Mike Kane]

I would be happy to give way, having got the names of those drugs right.

[Nick Thomas-Symonds]

I understand that a new policy is being put together by those in charge of the “British National Formulary”, which will set out how they will get more off-label drugs into the formulary. Does my hon. Friend agree that the sooner that policy is available for us to see the better?

[Mike Kane]

I congratulate my hon. Friend on doing so much work in this area since he came to Parliament. We can only hope that what he says is true; perhaps the Minister can give us more information on that point in her summing up.

The Prevent Breast Cancer research unit has more out-of-patent drugs under investigation for breast cancer prevention which may be even better for the future. As well as doing everything we can to extend the life of women with secondary breast cancer, we must do all we can to prevent breast cancer from occurring in the first place. As we all know, the adage is that prevention is better than cure. For those with secondary cancer, for whom cure is currently out of reach, many people will be striving to achieve that for the next generation.

At the moment, the system is standing in the way. A solution to make those drugs more widely available that would cost very little money indeed would be to ask NICE to list such drugs as approved for the new indication of prevention in the “British National Formulary”—following the evaluation of relevant clinical trials, of course—so that doctors can have confidence in prescribing them. The requirement to obtain a new Medicines and Healthcare Products Regulatory Agency licence for the new indication is expensive and impractical for repurposed medications, because they usually lack a sponsoring pharmaceutical company to champion the new use of the generic drug. I am sure the Minister would agree that such a small change would be transformative in the prevention of breast cancer. I hope that she will ask NICE to consider that change to the way in which drugs are listed in the “British National Formulary” to allow drugs that have been evaluated for a new purpose, such as prevention, to be listed as approved for that purpose.

When we lose someone prematurely to cancer, grief obviously follows. It has been my experience that when we lose someone to breast cancer, the grief is particularly poignant. Tonight, my thoughts and prayers will be with all my constituents who have either succumbed to the disease or are battling it, and with their families who carry the consequences. I lost my cousin Maura Kane to the disease, and my two friends Tom and Claire both lost their mothers to it. I stand in solidarity with my constituent and friend Sheila Higgins, who is battling this disease. She has been like a mother to me for the last two decades. Finally, my parliamentary assistant Suzanne Richards came back to work after Christmas with a clean bill of health. She was diagnosed with a virulent strain last year, but she had world-class treatment at the Wythenshawe and Christie hospitals. Today is her birthday, but it is a birthday that many of us feared she would never see—happy birthday, Suzanne.

European Medicines Agency

Nick Thomas-Symonds Excerpts

Wednesday 12th October 2016 Westminster Hall

[Daniel Zeichner (Cambridge) (Lab)]

I beg to move,

That this House has considered the future of the European Medicines Agency.

It is a pleasure to serve under your chairmanship, Mr McCabe. I am grateful for the opportunity to secure the debate, which I called with the expectation of being answered by a Minister from the Department for Exiting the European Union. It is unclear to me why that is not happening; perhaps that could be No. 171 on our list of questions about Brexit. None the less, I am sure we can expect a robust and helpful response from the Under-Secretary of State for Health, the hon. Member for Warrington South (David Mowat), who perhaps can explain that to us.

I start by laying my cards on the table. I am old enough to remember the John Major Government and the Maastricht treaty; I was perhaps one of the few at that time who actually read it. I also remember the troubles that the then Prime Minister had. Despite those difficult times, one of his major achievements was to secure the location of the European Medicines Agency in the United Kingdom. More than 20 years on, that success by a Conservative Prime Minister is being put at risk by the foolish path being pursued by the Conservative Government today. John Major famously referred to some of his colleagues—I apologise for this, Mr McCabe— as “bastards”; now they are running the show.

Last week, the Chancellor wryly commented that no one voted for Brexit to make us poorer. I wonder how many knew about the potential impact on one of our key industries, the future of which we are discussing today. My guess is that very few knew and that very few were voting to destroy British jobs and to do reckless damage to one of our great success stories. The area of the country I represent is a world leader in pharmaceuticals and life sciences. The Cambridge biomedical campus is at the pinnacle of international research, with, just a few years ago, AstraZeneca choosing Cambridge as its location rather than elsewhere in the world—but that was before 23 June.

Given that the vast majority know nothing of all this, let us set out some of the details about the European Medicines Agency and the significant role it has played over the past two decades in providing a harmonised approach to medicines regulation throughout the European Union. It was set up in 1995 from predecessor organisations, is a decentralised agency of the European Union and is located in London. Its mission is

“to foster scientific excellence in the evaluation and supervision of medicines, for the benefit of public and animal health in the European Union”.

Responsible for the scientific evaluation of human and veterinary medicines developed by pharmaceutical companies for use in the European Union, it can grant marketing authorisations for medicines that allow for their use across the 28 EU member states, as well as the countries of the European economic area—Iceland, Liechtenstein and Norway.

The EMA describes its four main functions as to facilitate development and access to medicines, to evaluate applications for marketing authorisation, to monitor the safety of medicines across their life cycle and to provide information to healthcare professionals and patients. Essentially, it is tasked with ensuring all medicines available on the EU market are safe, effective and of high quality, and it seeks to harmonise the work of existing national medicine regulatory bodies, such as the UK’s Medicines and Healthcare Products Regulatory Agency. It serves a market of more than 500 million people living in the European Union and covers a market of 25% of global pharmaceutical sales, of which the UK constitutes just 3%.

We should understand the EMA in the context of the growing global pharmaceutical market and the UK’s world-leading life sciences sector. The Prime Minister herself said in July:

“It is hard to think of an industry of greater strategic importance to Britain than its pharmaceutical industry”.

Indeed, the life sciences sector in our country has a turnover of more than £60 billion per year and generates exports worth £30 billion. In 2014 it invested £4 billion in research and development—more than any other sector. It employs 220,000 people in our country and 25% of the world’s top prescription medicines were discovered and developed in the United Kingdom. In my constituency of Cambridge alone, there are more than 160 life science companies reinforcing the strong local knowledge economy, and contributing to the economy well outside my region as well.

In passing, it is perhaps worth noting that Cambridge is one of just a handful of UK cities making a net contribution to the UK Treasury, thanks in no small part to its vibrant life sciences industry. Thus, the Cambridge view on how we secure future prosperity may perhaps be worth listening to. Cambridge, and those in this key sector, are most certainly unhappy with the current route being taken for a range of reasons and the future of the EMA is a good example. What will be its future, post-Brexit? What will be the impact on the future of our country’s life sciences industry more generally? What will be the real impact on the NHS—the real impact, not the bus slogan? The head of NHS England, Simon Stevens, has rightly insisted that the regulation of medicines and devices must be considered during the Brexit negotiations.

What are the options? As I have noted, countries inside the European economic area are included within the EMA’s centralised marketing authorisation procedure, which means that, if the UK remains part of the economic area, the process for regulating and supplying medicines in our country might see little change, which could bring stability for the sector.

[Nick Thomas-Symonds (Torfaen) (Lab)]

It is a pleasure to serve under your chairmanship, Mr McCabe. My concern is that, outside the European Union, we will be in a position in which pharmaceutical companies will have to go to the EMA to go through the process to make the drugs available, and subsequently have to do the same thing for the purposes of UK law, which will cause delay. Does my hon. Friend agree that it is important that we have parallel processes so that there is no disadvantage to patients in this country?

Oral Answers to Questions

Nick Thomas-Symonds Excerpts

Tuesday 5th July 2016 Commons Chamber

[Mr Jeremy Hunt]

I am very happy to do so. My right hon. Friend has campaigned long and hard, and rightly so, on such issues. The truth is that the guidelines under which the NHS operates for the sharing of patient-identifiable data are not as clear as they need to be. That is why I asked the Care Quality Commission to undertake an independent investigation into the quality of data protection by NHS organisations and Dame Fiona Caldicott to update her guidelines. I hope that we will have news on that soon and certainly before the summer recess, which will please my right hon. Friend.

[Nick Thomas-Symonds (Torfaen) (Lab)]

Happy 68th birthday to the NHS and thank you to its creator, Labour’s Aneurin Bevan.

According to research by the British Lung Foundation, the mortality rates for lung disease have not improved over the past 10 years. Will the Secretary of State take a lesson from the Welsh Government, which have put in place a specific strategy and delivery plan to tackle the issue?

[George Freeman]

The hon. Gentleman will know that the Under-Secretary of State for Health, my hon. Friend the Member for Battersea (Jane Ellison), opened an exhibition on this topic yesterday and that the Chancellor recently put an extra £5 million into mesothelioma research. Through the National Institute for Health Research, the Government are committing to invest in that disease area. We are also committed to ensuring that we drive up both research and better treatment for such diseases.

Support for Life-shortening Conditions

Nick Thomas-Symonds Excerpts

Tuesday 7th June 2016 Westminster Hall

[Stuart Andrew (Pudsey) (Con)]

I beg to move,

That this House has considered support for children and young people with life-shortening conditions.

Mr Percy, may I say what a pleasure it is to serve under your chairmanship for the first time? [Hon. Members: “Hear, hear.”]

Prior to entering Parliament, I spent most of my working life in the hospice movement, with both adults and children. I worked in hospices, including Hope House in Oswestry; East Lancashire hospice, which cares for adults in the east Lancashire area; and Martin House children’s hospice, which cares for children in the Yorkshire area. During that time, I saw children and their families at their most vulnerable, looking for any kind of solace in what are probably the most challenging circumstances that any of us could possibly imagine.

In my 14 years working in the sector, I saw the hospice movement adapt and grow to meet the needs of children and young people as medical technology and provision developed. That growth was achieved by listening and putting the patients first at all times. However, unfortunately, there are still cases across the broader palliative care sector where that does not always happen, and that is why this debate is so important. There are currently 49,000 children and young people—and the number is rising—living in the UK with life-shortening conditions.

[Nick Thomas-Symonds (Torfaen) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Percy. I congratulate the hon. Member for Pudsey (Stuart Andrew) on securing such an important debate. He just quoted a statistic. Does he agree that data collection is one of the most important factors? Robust data collection is needed so that we do not underestimate the number of children who are suffering from life-shortening conditions.

[Stuart Andrew]

The hon. Gentleman makes an important point, which I will come to later.

Some 49,000 children and young people are living with conditions that are life shortening, by which we mean conditions for which there is no reasonable hope of a cure and from which most of those young people are expected to die. The conditions can include conditions for which curative treatment may be feasible but can fail, as is often the case with cancers or congenital heart diseases; conditions for which premature death is inevitable but where there may be prolonged periods during which the child is well, such as Duchenne muscular dystrophy; progressive conditions such as Batten disease, without any curative treatment; and irreversible, but non-progressive, conditions that cause severe disability, leading to susceptibility to health complications and premature death, such as severe brain injuries.

The number of young people affected by one of those four categories of condition is equivalent to one child in every single school, and 50% of the 5,000 children who die in the UK each year will have one of those conditions. Of course, the number of people affected in other ways is much higher. Parents, siblings and other family members and friends can bring the number close to 400,000 people, which equates to more people than the population of the city of Leicester.

The 49,000 children and young people need palliative care from the point at which their condition is diagnosed or recognised—often at birth—until the end of their lives. There is an entire package of outcomes that good palliative care should achieve, which is quite different from that which adults receive given that children often need care throughout their entire life. Good care should meet children’s physical, social and emotional needs, enhancing their quality of life to ensure that the child and their family can come to terms with such life-altering issues.

Meningitis B Vaccine

Nick Thomas-Symonds Excerpts

Monday 25th April 2016 Westminster Hall

[Ben Howlett (Bath) (Con)]

I beg to move,

That this House has considered e-petition 108072 relating to the meningitis B vaccine.

As ever, it is a great pleasure to serve under your chairmanship, Mr Pritchard, and it is also a pleasure to see such a high level of interest in this debate from colleagues from all parts of the House. The petition that sparked this debate gathered over 820,000 signatures and received widespread media attention. Someone from every one of our 650 constituencies signed this petition; that shows just how horrifying meningitis B is, and gives a very strong indication of the level of public support for efforts to eradicate this disease.

Before today’s debate, the Petitions Committee and the Health Committee undertook joint oral evidence sessions, during which we heard from families who have been affected by meningitis B, as well as from charities and experts in the field. Some of those families are here today; I thank them for taking the time to share their stories with us. I also thank the charities that came along to the evidence sessions. The evidence that we heard will undoubtedly inform today’s very important debate.

Meningitis B is an evil disease that kills or maims hundreds of children in the UK every year. Finding out that their child has contracted this dreadful disease is clearly one of the worst things that can ever happen to a parent. We need to eradicate it as soon as possible, and I hope that this debate and the attention that it brings to the topic will lead to a new action plan from the Government.

[Nick Thomas-Symonds (Torfaen) (Lab)]

The hon. Gentleman has talked about the need for action soon. I got a sense of urgency from the constituents who contacted me. Does he agree that that sense of urgency needs to be reflected by the Joint Committee on Vaccination and Immunisation when reviewing the position with regard to meningitis B?

[Ben Howlett]

I thank the hon. Gentleman for his intervention; as ever, he is fast off the mark in intervening. I agree that urgent action is needed and I will come on to give the reasons why. From the evidence that we heard, there is, in effect, a two-year window for a vaccine’s shelf life, so I hope that when the Minister sums up, she will make that case clear. Previous campaigns on this issue have brought about change, and I can only hope that this campaign has gathered enough momentum to follow in their path.

Before I turn to the evidence that we heard in the joint sessions, I will mention a constituent of mine from Bath. I am sure that many hon. Members here have seen for themselves, as I have, the effects of this awful disease and what it does to those who suffer from it. One case that has particularly moved me is that of my constituent, Harmonie-Rose. She contracted meningitis B when she was just 10 months old. Just a few days after she had taken her first steps, she was taken into hospital with one of the worst cases of the disease that her doctors had ever seen. As she battled to survive, the toxins in her body spread to her limbs. The disease attacked and destroyed the tissue in her arms and legs, meaning that they had to be amputated in order to save her life.

Although Harmonie-Rose eventually recovered, she now lives as a quadruple amputee. Harmonie-Rose is a lovely, bubbly young child, living her life to the absolute full. She is beginning to adapt to her prosthetics; one day, she will have the freedom to move around that we all enjoy.

--- Later in debate ---

[Nick Thomas-Symonds]

I think the hon. Gentleman spoke about the benefits of reassurance. Does he agree that it is important that peace of mind is taken into account in evaluating the spreading of the vaccination programme?

[Ben Howlett]

Yes. I do not think JCVI gives as much consideration to peace of mind as it should. From speaking to the parents of Harmonie-Rose and others, I know that that sense of reassurance is in many instances unquantifiable, which makes it difficult for the JCVI to base a decision on peace of mind, but at the end of the day, my opinion, from the evidence we heard in the Committee hearings, is that we need a review of these matters.

As was highlighted repeatedly during the evidence sessions, the exact effect of the vaccine is still unknown, and parents should not ignore any potential signs of the disease just because their child has been immunised. They may still contract the disease, although the chance is much smaller. As ever, early identification is key. The families and experts we heard from stressed the need for strengthened education campaigns highlighting the symptoms of meningitis B, which include a rash that spreads quickly across the body, a high temperature with ice-cold feet and hands, and babies who are agitated and refusing to feed. While it is important that all parents receive that information, it also needs to be targeted at all those with responsibility for children, including childminders, teachers and nurses.

Dementia and Alzheimer’s Disease

Nick Thomas-Symonds Excerpts

Tuesday 12th April 2016 Westminster Hall

[Jim Shannon]

The hon. Gentleman is absolutely on the button on this issue. Very quickly on the figures, because stats can sometimes overawe us, it is estimated that by 2025 1.1 million people will have dementia and Alzheimer’s, and by 2051 2.1 million people will have the diseases. The numbers are enormous.

[Nick Thomas-Symonds (Torfaen) (Lab)]

I congratulate the hon. Gentleman on securing this debate on such an important topic. On the increase in numbers, does he agree that some vital work is being done on mitigating the symptoms of Alzheimer’s, not least in many care homes and residential homes in my constituency? Equally, we have to focus on palliative care for people with Alzheimer’s at the end of their life.

[Jim Shannon]

I was going to come to that issue. I thank the hon. Gentleman for that intervention. It is not just about the diagnosis of dementia and Alzheimer’s, but about the follow-up, the path of care and how we help the whole way through. I will touch on some of those things later in my speech.

We must not abandon or diminish our efforts to find a cure. We have to take into account the reality we face and carefully plan for the future, so that all those with dementia and Alzheimer’s can get the care and support they so desperately need. As the hon. Gentleman said, that is the issue we have to address.

--- Later in debate ---

[Jim Shannon]

My hon. Friend makes a salient point. He always hits on the issues that we should all be aware of.

I welcome the fact that the Government are developing a new carers strategy. I can only hope that this debate will raise awareness of the need for urgent and large-scale reform of the way in which the Government treat carers. I welcome the dementia-friendly communities strategy and the clusters of dementia groups. In my constituency we have a number of homes where patients with dementia and Alzheimer’s are looked after directly. I also have a dementia friends group who come together in the Church of Ireland church in Newtownards. They bring together all the people of Ards and North Down who want to participate. They give them art, they give them music and they give them a chance to interact, and it is marvellous what happens.

Briefly, I want to mention some of the things that happen in Northern Ireland. The Northern Ireland dementia strategy has a list of achievements to its credit in recent times, which I bring before the House to help the debate: £6.25 million in the Dementia Together Northern Ireland project; the appointment of dementia champions—perhaps the Minister will give us some thoughts about dementia champions in the whole of the United Kingdom, because things are happening, but I would like to hear about them.

[Nick Thomas-Symonds]

On dementia champions and dementia friends, will the hon. Gentleman join me in praising the wonderful work that is done by them, especially in providing sufferers with familiarity—the point made by the hon. Member for Belfast East (Gavin Robinson)? One of the ideas is to provide sufferers with things such as memory boxes to trigger the memory, which helps terrifically with this dreadful disease.

[Jim Shannon]

I thank the hon. Gentleman for his intervention.

National Minimum Wage: Care Sector

Nick Thomas-Symonds Excerpts

Wednesday 23rd March 2016 Westminster Hall

[Paul Blomfield]

I thank my hon. Friend for that intervention and I completely agree with her. I will illustrate that point further in my comments today.

[Nick Thomas-Symonds (Torfaen) (Lab)]

My hon. Friend has talked about the delay and the lack of action since the previous debate. Is not one of the reasons for that the fact that, when investigations are launched into these matters, they take an inordinately long time?

[Paul Blomfield]

My hon. Friend is absolutely right. Indeed, arising from our last debate, six investigations were commissioned. I asked a parliamentary question about those investigations. They were launched in February 2015 and have yet to report. That is clearly a disgrace.

I was talking about the human stories in my constituency. I know of two local women who work for a care company that uses GPS technology to monitor when they arrive for and leave appointments. They told me their stories. The company monitors the time that they spend travelling; to be accurate, it monitors the distances that they are travelling, but it does not pay them for that time. Incidentally, the company also rips them off on the cost of travelling; it pays them 12p a mile for using their own cars, when Her Majesty’s Revenue and Customs assumes for its calculations that 45p a mile is a reasonable benchmark.

One of the women, Sharon, told me that it was not unusual for her to be out of the house at 6.15 in the morning and not return until 11 o’clock at night. She gets a break, but she is only paid for seven hours’ work, which is the time she is actually at appointments. Never mind how long it has taken her to get to an appointment or to travel between appointments. Consequently, a so-called “hourly” rate of £7.52 means that, according to Melanie, who works alongside Sharon:

“A 15-minute visit is worth £1.88”.

These women have even been refused payment for the time they have spent waiting for ambulances to arrive for people in their care. Why do they put up with that abuse? As Sharon told me:

“You get in a bit of a trap, because I actually do love the work.”

We should be ashamed that tens of thousands of people like Melanie and Sharon across the country, who look after our most vulnerable, are treated in that way simply because they care.

It also makes a mockery of our national minimum wage legislation. Let us be clear that it is a criminal offence knowingly not to pay the national minimum wage. However, the situation has not improved since we last debated this issue. In fact, there are signs—

Clinical Negligence Claims

Nick Thomas-Symonds Excerpts

Wednesday 9th March 2016 Westminster Hall

[Sir Edward Garnier (Harborough) (Con)]

I beg to move,

That this House has considered the Government’s proposals on fixed recoverable costs in clinical negligence claims.

Thank you, Mr Nuttall, for presiding over this very short debate. I thank Mr Speaker for granting it and my hon. Friend the Minister for being here to respond on behalf of the Government.

I should make it clear at the outset that, although I am a barrister in private practice, my work does not include clinical negligence cases, so I have no personal interest in this subject. I have, however, been approached by a number of solicitors from Leicestershire, the Leicestershire Law Society and the Law Society of England and Wales. They are concerned that the Government’s consultation on the fixed fee regime, which is being conducted by the Department of Health, has been delayed, although I understand that the Government intend to introduce a fixed recoverable cost regime in October. Those concerns are shared by a number of other solicitors’ firms, including Irwin Mitchell and Slater and Gordon, and organisations such as the Association of Personal Injury Lawyers, the Society of Clinical Injury Lawyers and the Bar Council. I am grateful to all of them for the assistance they have given me in preparing for this short debate.

Let me begin by placing my concerns in context. On the face of it, the Secretary of State’s statement, which has been trailed in the press—apparently, he is going to make a statement in the House of Commons this afternoon—confuses punishment, which is dealt with under criminal law, and civil law remedies, but no doubt he will make himself clearer this afternoon. Perhaps my hon. Friend the Minister can clarify that issue briefly this morning.

I accept that the Government do not have a bottomless purse. Taxpayers’ money is needed to pay for a huge range of public services, all of which compete for scarce resources at a time when the Chancellor is trying to balance the books and decrease public expenditure.

[Nick Thomas-Symonds (Torfaen) (Lab)]

Will the right hon. and learned Gentleman give way?

[Sir Edward Garnier]

I will not give way.

That this debate takes place only a week before the Budget underlies that point. I further accept that the vast majority of patients who visit a GP, an NHS surgery or a hospital leave satisfied with their treatment and the outcome, but very occasionally something goes wrong. In just over 3% of those cases an error caused by a negligent decision or act of omission by a clinician leads to a claim being made by the injured person against the NHS. Such cases can include, for example, birth injuries or misdiagnosed or mistreated illnesses. Of course, those are not deliberate actions by ill-motivated doctors or nurses, but negligent ones that lead to adverse consequences for the patient.

What does 3% mean numerically? In 2011-12, the NHS reported just under 420,000 so-called “adverse incidents causing harm”, of which 13,500, or just over 3.2%, resulted in a clinical negligence claim. In the following year, there were just over 458,000 such incidents and 16,000 claims, or about 3.5%. In 2013-14, there were just over 470,000 incidents and just under 18,500 claims, or 3.9%. In the great scheme of things, those numbers are small, but they represent permanently damaged or shortened lives, pain, suffering, heartache and anguish.

Of course, they also represent monetary expense to the claimant and the NHS. We should therefore aim to ensure justice and proper compensation for the claimant who has been injured, and protect the taxpayer from excessive and unnecessary expense in legal and medical experts’ fees.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health (Ben Gummer)]

This is a fascinating matter, which deserves a great deal of debate. We could discuss this interesting subject for many hours. I am grateful to my right hon. and learned Friend the Member for Harborough (Sir Edward Garnier) for condensing a complicated issue into a 15-minute, eloquent explanation of the problems that face us.

In addition to the reading that my right hon. and learned Friend has already done, I point him in the direction of the MBRRACE-UK—Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK—report into the quality of investigations into stillbirths and neonatal injuries and deaths in the NHS, which was published at the end of last year. Although it charts a significant improvement in the reduction of stillbirths and neonatal deaths over the past 20 years due to the advancement of science, it draws one very depressing conclusion, which is that the quality of investigations has not improved since the 1990s.

I admit immediately that there is not yet any clear, scientifically proved correlation between that and the fact that litigation costs have increased, but I hope that my right hon. and learned Friend will accept my initial submission, which is that there is not the evidence for one of his claims, that somehow the increase in litigation automatically leads to an improvement in investigation and, therefore, to an improvement in patient safety. I therefore suggest that one of the statements that he made in his very careful speech is not a full reflection of the truth that we are seeking to uncover.

My right hon. and learned Friend said that we should aim to achieve proper justice and proper compensation for the claimant, and that that is the endpoint of litigation —but it is only a partial endpoint. The first thing that we are trying to achieve is an understanding of what went wrong to ensure that that is immediately transmitted back into the service, so that we prevent such a clinical catastrophe from happening to another individual or family. That is exactly where the existing system does not work, because it militates against learning early in the litigation process. In many instances, it provides a definitive account only at the point of judgment. That is what we are seeking to change through our proposed reform.

[Nick Thomas-Symonds]

I am grateful to the Minister for giving way, and I congratulate the right hon. and learned Member for Harborough (Sir Edward Garnier) on securing the debate. I also declare that I am a non-practising door tenant at Civitas Law in Cardiff.

I accept the Minister’s point about the quality of investigation. Will he also agree that access to justice is itself crucial, particularly given that the Lord Chief Justice, Lord Thomas of Cwmgiedd, recently said that access to justice is now “unaffordable to most” and available only to the very richest?

[Ben Gummer]

I will turn to access to justice. I do not entirely accept the hon. Gentleman’s interpretation of the judge’s words.

In our proposed reforms, I intend to change the balance for the NHS Litigation Authority and for claimant lawyers to ensure that we get to a single version of the truth as early in the process as possible. I accept in its entirety my right hon. and learned Friend’s interpretation of the NHSLA’s performance in past years. I do so on the basis that many claimants have been immensely frustrated—as have the clinicians involved—by the length of time that trusts and the LA have had to respond to claims, the length of time it often takes to reach a resolution and the fact that there is often too much defence, delay and prevarication. At the same time, I have full confidence in the NHSLA’s current management, because I have seen a real determination to get to grips with the problems it inherited and change the authority into something far more fit for purpose.

I accept my right hon. and learned Friend’s contention that we need to change what happens with the NHSLA, but I posit that the existing costs regime encourages some claimant lawyers to stack costs in the early stage of a claim process rather than get to what we need to do: to establish a version of the truth agreed between all parties. I am not arguing that that is a deliberate and malicious intention, but that is how the system is constructed at the moment. Therefore, in attempting to reform how costs are settled between the NHSLA and claimants, we want to incentivise learning right at the beginning of the process, to ensure that it is as rapid as possible and that, if claimants have a fair claim, they receive justice and compensation as quickly as possible. Our interests are therefore entirely aligned.

That is why I say to claimant lawyers—I have said this privately to them on several occasions—that this is a genuine consultation. We are seeking to find out how best to reform a system that we all accept is not right. I therefore warn them against peremptory lobbying of Members of Parliament about a scheme that has not yet been determined. This is a genuine consultation, in which we will accept all their views, but they cannot—I hope they will not—proceed on a basis that could lay them open to accusations of pleading for special interests rather than trying to contribute to the consultation.