Medical Cannabis under Prescription

Stephen Twigg Excerpts

Monday 20th May 2019 Commons Chamber

[Stephen Twigg (Liverpool, West Derby) (Lab/Co-op)]

It is a pleasure to follow the hon. Member for South Suffolk (James Cartlidge), who made a powerful and reflective speech. I particularly endorse what he says about the importance of having such evidence, a lot of which comes from the families themselves.

I join in congratulating the right hon. Member for Hemel Hempstead (Sir Mike Penning) and my hon. Friend the Member for Gower (Tonia Antoniazzi), the co-chairs of the all-party parliamentary group on medical cannabis under prescription, both on securing this important debate and on the leadership role they have played on a cross-party basis in putting this important question on the House’s agenda.

As many Members have said, hopes were raised last year when the Home Office did what it did, and I strongly support what my hon. Friend the Member for Manchester, Withington (Jeff Smith) said about the importance of achieving a bespoke solution for our country. In particular, I support what he said about learning from international evidence. That combination of listening to the families and the campaigners and learning from the evidence of other countries could assist us in achieving the urgency that we all want to see.

[Sir Mike Penning]

Every other country that has done this has done it in a bespoke way. The fear is that if we introduce a bespoke system for a product or drug, everybody else will jump on the bandwagon, but most countries in Europe have addressed this. It has to be bespoke, not least because cannabis was illegal as a schedule 1 drug in this country for so long, but the evidence is here in the mums and dads and the children.

--- Later in debate ---

[Stephen Twigg]

I endorse everything the right hon. Gentleman says, and his point about the evidence being here brings me to the main subject of my speech, which is to speak on behalf of my constituent Nathaniel Leahy and, in particular, his parents Lauren and James. His mum, Lauren, is here in the Gallery today. When Nathaniel was three months old he had his first seizure, and he was diagnosed with a rare genetic disorder that resulted in his experiencing up to 100 epileptic seizures every day. His mum and dad were told by the doctors that his condition was so rare that, as far as they could see, it was the only case anywhere in the world. Eventually, he was prescribed Epidiolex, via the NHS.

Lauren has told me that initially Epidiolex did bring some positive effects but they were not sustained and they “plateaued”, in her word, so she looked for something that would do more to ease the incredible pain that her son was facing. She was unable to secure a prescription via the NHS, so she went to the Portland Hospital here in London, where the specialist, who was previously at Great Ormond Street Hospital, gave a private prescription for Bedrolite. That is the prescription Nathaniel is now benefiting from; it is making a difference to the quality of his life. The cost to the family of that private prescription is £2,200 a month; they are fundraising and crowdsourcing funds in order to get that treatment for their son, but that surely cannot be right. We have heard from a number of speakers on both sides of the House about the principles of our national health service of meeting need and of people not having to contribute financially in that way. That figure of £2,200 a month is extraordinary, which is why I was keen to make a brief contribution in today’s debate.

We need to move forward based on the best available evidence, but part of that evidence is surely the voices of the families, and we need to make sure they are heard in this debate. Nathaniel recently celebrated his first birthday. I hope his mum does not mind my saying this, but she said to me earlier that it was a first birthday they were never sure he was going to see. They are very proud that he got to celebrate his first birthday. I hope that when the Minister closes the debate, she will be able to offer us not only some hope, but, perhaps more importantly, a sense of urgency that I can take back to my constituents and, in particular, to Nathaniel and his family.

Access to Medical Cannabis

Stephen Twigg Excerpts

Monday 8th April 2019 Commons Chamber

[Matt Hancock]

I have heard that accusation being made by a couple of the parents. I am advised that that is not the case, but I am very much looking into it because in these circumstances I always think we need to listen to the people who are trying to resolve the issue. I am looking into that very point.

[Stephen Twigg (Liverpool, West Derby) (Lab/Co-op)]

I have previously raised the case of my constituent, 11-month-old Nathaniel Leahy, who, owing to his extremely rare form of epilepsy, lives in great pain. His mum told me today:

“I am living in fear each day that Nathaniel will not make it to the next day. We were promised in November of last year that this medicine would be available.”

Does the Secretary of State understand the powerful sense of frustration felt by families such as Nathaniel’s, and will he address the question of the guidelines so that we can have fewer stringent guidelines, to benefit patients?

[Matt Hancock]

I entirely understand that sense of frustration. I went to meet some of the parents to hear directly from them the pain and suffering that they and their children are feeling, which I entirely understand. That is one of the reasons why we are pushing so hard to try to resolve this. Resolving the questions around the guidelines is also important but, as the hon. Gentleman knows, those guidelines are written independently of Ministers.

Services for People with Autism

Stephen Twigg Excerpts

Thursday 21st March 2019 Commons Chamber

[Stephen Twigg (Liverpool, West Derby) (Lab/Co-op)]

It is a pleasure to follow the hon. Member for North Cornwall (Scott Mann). I congratulate the hon. Member for Bexhill and Battle (Huw Merriman) on opening today’s debate, and I join him in paying tribute to the fantastic work of the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan). I join others in sending our very best wishes to her and her family today.

I want to focus on children with autism. We know that, from the outset, families face an uphill struggle to obtain the help and support that they deserve, and I pay tribute to the work of a relatively new organisation in Liverpool called Autism in Motion, which seeks to provide a voice for parents. It was set up by three Liverpool mums of children on the autistic spectrum. National guidelines state that people should start their diagnostic assessment within three months of being referred to the autism team, but statistics obtained last year by the right hon. Member for North Norfolk (Norman Lamb) revealed a postcode lottery in waiting times for an initial appointment, with many parts of the country falling woefully short of the three-month target. In some parts of the country, it can take years to receive a diagnosis of autism.

[Matt Rodda (Reading East) (Lab)]

Does my hon. Friend agree that it would be helpful to many families and indeed professionals who are challenged by these circumstances if the Government were able to put more resources specifically into initial teacher training and in-service training to help staff in schools to understand autism better and to better support children with autistic spectrum issues?

[Stephen Twigg]

My hon. Friend makes an excellent point, and I shall refer later in my speech to the Abbotts Lea special school in Liverpool, which is a shining example of the very best practice that exists in our education system.

Delays in diagnosing autism mean that many autistic people do not receive the support that they need, which can really harm their life chances. For too many families, securing the right support for their child at school is a hugely difficult task, and can become an all-consuming battle. The passport to receiving this extra support is an education, health and care—or EHC—plan, which is intended to bring together a child’s different needs in education, health and social care. Autism is the most common type of special need for school pupils who have an EHC plan. However, as budgets have been reduced, local councils often struggle to respond to demand, leading to EHC plans being refused or delayed well beyond the 20-week cut-off date by which a decision on whether to approve an EHC plan should be made.

[Mr George Howarth (Knowsley) (Lab)]

My hon. Friend is making an important point. In my experience—and, I suspect, that of others—the delays in getting an assessment are resulting in some parents having to pay between £2,000 and £3,000 out of their own pocket because they cannot afford to wait such a long time for their children to be assessed.

[Stephen Twigg]

My right hon. Friend makes an important point. This is one of the many aspects of this challenge that makes life very difficult for the families of children with autism, and we really need to do better by them.

Even those families who do get a plan are often not given the support they need. A report published by the all-party parliamentary group on autism found that only one in 10 parents was very satisfied with the process of agreeing an EHC plan for their child, with 60% saying that they was dissatisfied. In Liverpool, a recent Ofsted inspection into how Liverpool City Council and the local clinical commissioning group catered for children with special educational needs and disabilities found “significant concerns” and “long-standing issues” in local practice. In particular, the inspection found serious weaknesses in the EHC planning process as well as in the quality of the plans that were being made. In response to these concerns, the city council is required to submit a written statement of action to explain how Liverpool will tackle the areas of significant weakness identified.

I am pleased that the council is responding with the urgency that that report demands. It has responded positively, but we know that Liverpool is far from unique. In fact, a majority—more than 50%—of the SEND area inspections nationally have resulted in the requirement for a statement of written action. This is a huge national challenge.



Across the country, devastating cuts in local government funding have contributed to a crisis in funding for children with special education needs and councils are struggling to meet their statutory duties for children with autism. Data from freedom of information requests and council reports show that councils are overspending massively. Overspending on SEND has trebled in the past three years, and it is continuing to increase, with councils having to raid their overall schools budget for millions to respond to demand. Cuts to local authority budgets have further reduced the kind of support that used to be in place for social activities for children with autism and additional support for their families.

Despite this challenging environment, there are brilliant examples across the country of great support for autistic children and their families. In Liverpool, we have some truly outstanding special schools, and it is not just me saying that: Ofsted says that they are truly outstanding, too. They include three in my constituency—Redbridge, Bank View and Ernest Cookson—which serve children with autism.

I want to focus on Abbot’s Lea School, which is in fact in the constituency of my hon. Friend the Member for Garston and Halewood (Maria Eagle). The school caters for over 250 students from three to 19 years old, and its philosophy of education is the ASD model. I pay tribute to headteacher Ania Hildrey, who told me this week that she focuses equally on academic progress, specialist therapeutic support and development of life skills. She has transformed its curriculum, and she unapologetically aspires to be the best special school in the world.

Like so many other specialist schools, however, Abbot’s Lea is being held back from being able to provide the very best service, because local government funding does not go far enough to meet the demand for specialist placements or mainstream support. Ania told me that some of the welcome reforms in the Children and Families Act 2014 have not been implemented as planned, leading to poor school planning and a lack of joint commissioning. Delays in autism diagnosis often mean that schools receive referrals much later than they would like, and that limits schools’ ability to transform pupils’ lives.

Abbot’s Lea is keen to engage with both Government and the local authority to help shape the provision of education for children and young people with autism. I urge the Minister and her colleagues in the Department for Education to listen and engage with the concerns of brilliant headteachers such as Ania and with families in Liverpool and elsewhere and to work on a cross-Government basis to improve outcomes for children with autism. We urgently need to improve the quality of services provided to children, young people and their families, but that can be achieved only with proper resourcing and by ensuring that the barriers that still exist between our health and education systems are broken down. If we are truly going to make the progress that we all want to see, it is incumbent on us to listen to children and young people with autism, to their parents and families and to professionals, such as Ania Hildrey, who are working so hard to deliver the best in schools in Liverpool and around the country.

NICE Appraisals: Rare Diseases Treatments

Stephen Twigg Excerpts

Thursday 21st March 2019 Commons Chamber

[Stephen Twigg (Liverpool, West Derby) (Lab/Co-op)]

It is a pleasure to follow my hon. Friend the Member for West Ham (Lyn Brown), who made her case with great power and passion. I congratulate my hon. Friends the Members for Blaydon (Liz Twist) and for North Tyneside (Mary Glindon) on securing this important and timely debate.

Until recently, I had the pleasure of chairing the all-party group on rare, genetic and undiagnosed conditions, which receives secretariat support from Genetic Alliance UK. The all-party group aims to raise awareness in Parliament about such conditions and to ensure that patients and families can access appropriate care and support. My hon. Friend the Member for Hornsey and Wood Green (Catherine West) has taken over as chair of the all-party group. Unfortunately, she had prior commitments today, but otherwise would have been here to take part in the debate.

My constituency in Liverpool is home to the fantastic Alder Hey Children’s Hospital, which works in close partnership with the University of Liverpool and the charitable sector to provide more research opportunities for children with rare diseases and their families. For example, in the rare neuromuscular diseases, Alder Hey has worked with patient-advocate groups and national charities to increase capacity and resources to offer access to clinical trials of new disease-modifying agents. Since 2016, Alder Hey has opened 19 new clinical trials for Duchenne muscular dystrophy alone, enrolling nearly 100 boys in these important trials. By providing excellent, world-class clinical and research expertise and working in partnership with the charitable sector, Alder Hey has been able to provide more opportunities for children with rare diseases to take part in research studies.

In my role as chair of the all-party group, it was a privilege to get to know the rare diseases community. During that time, the issue that was consistently raised with me by patients and their families, clinicians and pharmaceutical companies was the challenge they face attempting to navigate NHS England and NICE’s appraisal processes for rare disease treatment. As other Members have said, patient access to new orphan medicines in the UK lags behind many other European countries, including Germany, France and Spain. The Office of Health Economics found that the UK is slower at making access decisions and approves far fewer medicines for reimbursement than other European countries. According to the recent MAP BioPharma report, which used data from a four-year period, almost a quarter of licensed orphan medicines have not been appraised at all by NICE or NHS England. This can prevent rare disease patients from having any opportunity to access treatment.

The lack of capacity to appraise orphan medicines is just one of the systemic flaws—we have heard about others—with the current NICE appraisal system. The multiple pathways through which medicines can be appraised create further complications and delays. It is often unclear why one route is chosen over the other, so very similar orphan medicines can be subject to vastly different assessment criteria. We also know that patients are often stuck in limbo waiting for the results of private negotiations about price between companies and the NHS years after the market authorisation of their potential treatment.

It is against that backdrop that the all-party group asked Genetic Alliance UK to propose a method of making decisions about rare disease medicines that would be more effective, transparent and fair. The project is called “resetting the model” and it aims to develop a flexible new vision for getting access to rare disease medicines for the UK, and it will be delivered in the coming months. It is absolutely clear that the current NICE appraisal process is simply not fit for purpose and is acting to restrict many rare disease patients from having the opportunity to get access to potentially life-changing treatment.

Let me address a related issue. NICE has been consulting on guidelines for cannabis-based products for medicinal use. On Tuesday, I had the pleasure of meeting my constituent, Lauren Abernethy, who is the mother of Nathaniel. Nathaniel is 10 months old and has a type of epilepsy that is so rare that when he was diagnosed his doctors told Lauren and James, his dad, that Nathaniel is the only known case with this type of genetic mutation recorded anywhere in the world. For the next three months of his life, Nathaniel was in Alder Hey Hospital undergoing tests, and for most of that time he was in critical care.

Lauren was here on Tuesday as part of the “End Our Pain” lobby of Parliament. Owing to the extremely rare type of epilepsy that Nathaniel has, antiepileptic drugs do not work, so Nathaniel was granted the use of Epidolex, a medical cannabis product. He has reacted positively to the treatment, going from being in a state of continuous seizures to now having, on a good day, as few as three to five seizures. However, despite that progress, he continues to live in great pain. He jerks and twitches continuously, which is known as myoclonic jerks, and has up to 100 of these every day. Access to full extract cannabis oil might offer Nathaniel a better quality of life, which he surely deserves, but like so many other children who are suffering from intractable epilepsy, Nathaniel has so far been denied access to that treatment.

I welcomed the decision last November by the Home Secretary to reschedule certain cannabis-based products for medical use, but the reality for patients such as Nathaniel is very different. Only a tiny handful have succeeded in getting a prescription. Patients, some of whom are as young as Nathaniel, are being blocked from access to medicine, which, as the evidence shows, has at least a possibility of relieving their symptoms. I urge the Minister in his response today to talk about how a policy can be put in place, based on evidence, that enables patients with rare diseases who could benefit from medical cannabis getting access to it.

More broadly, may I echo the comments that have been made on both sides of the Chamber and ask the Minister today to set out what he will do to take this crucial set of questions forward? In particular, will he work with Genetic Alliance UK so that we can reset the model, working with NICE and NHS England, so that patients with rare diseases get the fair access to medicines and treatment that, surely, they all deserve.

Woodlands Hospice, Aintree

Stephen Twigg Excerpts

Wednesday 7th February 2018 Commons Chamber

[Dan Carden]

Absolutely, and I am coming to how the hospice sector is such a key part of our national health service.

It was a privilege to learn about the work of the wonderful staff and, importantly, the volunteers. More than 125,000 people give their time to volunteer for hospices each year. They are the lifeblood of the hospice sector. The Woodlands’ volunteer workforce of over 200 people from all walks of life and all ages add value to the patient experience, while the volunteers themselves get opportunities to develop their skills, avoid isolation and build a sense of community.

Woodlands Hospice must raise £1.3 million, which it tries to achieve with the help and support of communities in my constituency and beyond, but against the backdrop of financial uncertainty and squeezed living standards, that is no easy feat, particularly in more deprived communities such as mine, which have been hardest hit by austerity. I will return to the issue of funding later, but there are a number of ways our community supports Woodlands that do not involve straightforward cash donations: volunteering, undertaking challenge events for sponsorship, holding coffee mornings and—this year, I hope—becoming a friend of Woodlands via the new membership group scheme, which I will be taking up myself as soon as it is operational.

The support for Woodlands shown by my constituents illustrates how dearly we hold the care it provides. All Members here know how much their constituents value the care provided by hospices in their own local areas. That is what inspired me to call this debate tonight—to highlight the value of hospices as an essential part of the healthcare economy and to look at sustainable funding for hospices around the UK, particularly in the more deprived areas. It is right that those in more deprived areas, who will struggle to raise funds, receive more statutory funding.

[Stephen Twigg (Liverpool, West Derby) (Lab/Co-op)]

I am grateful to my hon. Friend and neighbour for giving way. Like him, I recently visited Woodlands, and I congratulate him on securing this debate. Does he agree that the NHS funding that Woodlands receives is vital to its long-term sustainability and that we are seeking assurances from the Minister that at the very least it will be maintained in the future?

[Dan Carden]

I absolutely agree. I hope that this debate will focus people’s eyes on the hospice sector across the UK and at Woodlands, where we need to ensure viable funding, and also funding that is longer term and better planned. Pressure needs to be taken off hospice managers as they plan the kind of care they provide for our constituents.

People who face progressive life-limiting illnesses require different levels of care. Apart from care and treatments specific to their conditions, they are likely to have what is often called palliative care, particularly as they approach the end of their lives. Death is a natural part of life. We will all die eventually, and most deaths—around three quarters—are expected, so the majority will require some form of palliative care, and everyone deserves to be able to end their life in comfort and dignity. That principle should be central to any civilised society.

There is, I am sure, agreement across the House on the importance of palliative care. It is not a bonus or extra, but an essential part of a good healthcare system. The hospice sector supports around 200,000 people with terminal and life-limiting conditions in the UK every year. This amounts to more than four in 10 of those estimated to need expert end-of-life care. Hospice care is free for everyone and provided for however long it is needed, be it days, weeks or even months. More than 40,000 people in the UK receive bereavement support from hospices each year.

Hospices support people with a wide range of conditions, including cancer, motor neurone disease, cardiovascular disease, dementia, multiple sclerosis and Parkinson’s disease—to name just a few—and they are increasingly supporting people with multiple life-limiting conditions. Most hospice care is provided while people are in their own home, but it can also be provided in a care home or at the hospice itself as an in-patient. It is a style of care rather than something that necessarily takes place just in one building. Hospices also aim to feel far more like a home than a hospital.

Outcomes are difficult to assess, and of course most patients do pass away, but it is worth remembering that many do not. A gentle, dignified, reflective and peaceful death with 24/7 expert care and surrounded by loved-ones is something that cannot be measured by traditional means, but we can measure the value in the appreciation and wellbeing of the patients and families helped through their bereavement. When I visited Woodlands, I was delighted to meet people who had long and happy associations with the hospice, had made friends there and still visited regularly for support with their health, but also to keep in touch with staff and friends.

It is also clear that NHS pressures mean increased pressures on hospices.

NHS Shared Business Services

Stephen Twigg Excerpts

Tuesday 27th June 2017 Commons Chamber

[Mr Hunt]

Absolutely. My hon. Friend is right to point out that we are in a different world from the world of 2011. The future is to transport patient records securely over electronic systems. It is much quicker and there is much less room for error, but we do need the back-up systems that she mentioned.

[Stephen Twigg (Liverpool, West Derby) (Lab/Co-op)]

I wrote to the Secretary of State in January on behalf of a GP practice in my constituency that is concerned about the potential impact on staff working at the practice. I raised the matter again four months ago during the previous urgent question, and the Secretary of State promised to look into the impact on staff. Can he report back to the House today?

[Mr Hunt]

I will relook at the situation in that surgery to ensure that we are learning any lessons that need to be learned. However, this is a complex process. There have already been two clinical reviews in the vast majority of the high risk cases, and we want to have a third review to really establish whether there was any actual patient harm. That takes clinician time, which is one of the reasons why we have not been able to complete the process by today. It will take until Christmas to do that because we have to balance the other responsibilities that clinicians have in their daily work.

NHS Shared Business Services

Stephen Twigg Excerpts

Monday 27th February 2017 Commons Chamber

[Mr Hunt]

As ever, my right hon. Friend is thinking extremely intelligently about the problems we really face. The hon. Member for Richmond Park (Sarah Olney) asked about the security of the data files, but the security of electronic files is the issue we are going to have to think about much more seriously as we give everyone access to their electronic records, and because of the known issues around hacking. This is an issue we are taking very seriously and doing more work on.

[Stephen Twigg (Liverpool, West Derby) (Lab/Co-op)]

I wrote to the Secretary of State on this subject on behalf of the Jubilee medical centre in Croxteth, in my constituency, on 13 January. I have not yet had a reply from him, but perhaps he could respond today to the point I raised about staff safety. We have had the issue of patient safety, but what about the potential danger to staff from these records not being available about patients?

[Mr Hunt]

I would like to reflect on the hon. Gentleman’s question in a bit more detail rather than giving an instant answer, because, to date, no one has brought to my notice particular issues about staff safety, but that is always something we take extremely seriously. We are aware of the extra administrative pressure on staff caused by needing to go through records where there is a higher risk of harm to patients—indeed, we have given GP surgeries extra resources to cover that additional time—but I will look into the issue the hon. Gentleman raises.

Swine Flu Vaccination: Compensation

Stephen Twigg Excerpts

Tuesday 12th January 2016 Westminster Hall

[Stephen Twigg (Liverpool, West Derby) (Lab/Co-op)]

I beg to move,

That this House has considered the compensation for people with narcolepsy and cataplexy linked to swine flu vaccination.

It is a pleasure to serve under your chairmanship, Mr Chope. I thank Mr Speaker for allowing this debate on an important issue, and I thank the Minister for being here to respond to the concerns that I will raise on behalf of my constituent, Lucas Carleton.

I begin by saying something about vaccinations in the broad sense. We are fortunate in this country to have a robust and comprehensive vaccination policy. The policy has saved countless lives since its incarnation almost 100 years ago. Through our vaccination programmes, and those of other nations, we have successfully eradicated diseases such as smallpox across the world, and have reduced the number of people affected by polio by something like 98% over the past three decades. To this day, the advice from mainstream medical professionals and the national health service is that everyone should be vaccinated, not only to protect themselves but for the wider benefit of the communities in which we all live.

Historically, we have seen the tragic consequences of terrible epidemics that vaccinations can protect us against. For example, during the ’20s and ’30s, Spanish flu killed more people than the first world war had. Vaccinations, which are often brushed off in our everyday lives as a painful exercise, save thousands of lives a year, reducing human suffering and misery on a huge scale.

There is no serious scientific debate among mainstream scientists about the benefits of vaccination to public health—medical advice is clear that vaccination is one of the most successful and cost-effective public health measures—but vaccination is not without controversy. There have been a small number of instances when vaccinations have been responsible for adverse reactions, causing sometimes long-term and sometimes irreversible problems. I stress that that is rare, but tragically it is the reason we are here today.

During 2008 and 2009 there was a global swine flu pandemic, also known as the H1N1 pandemic. The particular strain of flu originated in Mexico, but it quickly spread, leading to the World Health Organisation issuing its first ever “public health emergency of international concern” declaration. Cases were confirmed in 171 countries and more than half a million people are thought to have died as a consequence.

During the outbreak, the British Government decided to purchase enough swine flu vaccine to immunise the entire population with two doses, meaning that 120 million doses were ordered. Almost 99% of the vaccines that were given out were Pandemrix, manufactured by GlaxoSmithKline—GSK.

Vaccines, as with all pharmaceutical products, are subject to extensive clinical trials. However, it is recognised that during a pandemic the trials may not be as rigorous as they would otherwise be, because of the demand to safeguard lives. Completing mass trials can takes months or even years. For that reason, the European Union intervened and licensed Pandemrix for use within the EU, including the UK, without the completion of the normal rigorous trials. That was followed by advice from the UK’s Joint Council for Vaccination and Immunisation, which advised that the Government begin immunisation to protect against a swine flu pandemic in this country.

As a consequence of the speeding up of the licensing process by both the EU and national Governments, GSK was not prepared to supply the vaccine to Governments unless it was given indemnity from any liability. The UK Government gave GSK that indemnity. For a number of reasons, other countries were much more cautious about granting an early licence. For example, the Food and Drug Administration in the United States had a policy of not licensing adjuvant vaccines—that is where a substance is added to vaccines to increase the body’s immune response—without robust clinical trials demonstrating that they are safe. Adjuvant vaccines have additional chemicals that speed up the body’s immune reaction to the antigen, and it is considered that that sometimes increases the risk of adverse reactions. That possibility led other countries, such as Switzerland, to license Pandemrix only for adults and not for children.

Pandemic swine flu vaccinations were added to the Vaccine Damage Payment Act 1979 by the Vaccine Damage Payments (Specified Diseases) Order 2009 in September 2009. The vaccine was added to the Act for the duration of the pandemic campaign, which lasted from October 2009 to August 2010. The campaign ended when the Swedish and Finnish Governments expressed concerns about a vast increase in the number of paediatric narcolepsy cases in children under 10. The condition usually shows symptoms in those in the 15 to 30 age bracket. It was not until August 2010 that the Swedish and Finnish Governments discovered a link with Pandemrix. On 1 September 2010, Finland stopped vaccinating with Pandemrix. The UK Government discontinued the pandemic campaign from the same date, but encouraged GPs to continue vaccinating with Pandemrix where no seasonal flu vaccine was available.

[Jim Shannon (Strangford) (DUP)]

Figures indicate that one in 2,000 people have narcolepsy that is not related to vaccination. When it comes to compensation, how would the hon. Gentleman ensure that those who are vaccinated and are due compensation actually get it?

[Stephen Twigg]

The hon. Gentleman’s intervention is timely, because he raises the issue to which I now turn. Lucas Carleton is a young boy who lives in my constituency in Liverpool. On 17 January 2011, he was vaccinated with Pandemrix. He was seven years old at the time and was in good health. His mother, Pauline, asked her GP to vaccinate Lucas because a family friend had recently been very ill with swine flu and, perfectly understandably, she believed it was a responsible step to get her son vaccinated. A week or two after Lucas received the vaccination, he began to experience excessive daytime sleepiness, which is a common characteristic of narcolepsy. He also started falling when he laughed or got excited, made strange facial expressions and experienced a loss of control of his tongue. That is known as cataplexy and is a common symptom of narcolepsy. After two to three weeks, Pauline sought medical help from a GP and Lucas was taken to hospital on a number of occasions. In August 2011, he was diagnosed with narcolepsy.

Narcolepsy is an incurable neurological disorder that until 1999 was classified as a psychiatric condition. Its main symptoms involve excessive daytime sleeping, hallucinations, sleep paralysis, temperature control problems and cataplexy. Cataplexy is a side symptom of narcolepsy that causes involuntary muscle relaxation brought on, for example, by laughing or anger. Narcolepsy begins in the hypothalamus, the part of our brain that controls our autonomic nervous system, which involves processes such as breathing and the regulation of the heart. Narcolepsy occurs when the brain cells that produce neurotoxins in the hypothalamus are destroyed, either through a trauma or through the body’s immune system mistaking those cells as foreign bodies.

The Department for Work and Pensions has accepted that the Pandemrix vaccine is capable of causing narcolepsy in children. It has also accepted that, in many cases, Pandemrix did in fact cause narcolepsy in children. However, it disputes that narcolepsy amounts to a severe disability. That is an issue on which the DWP has been defeated in court, but I understand that it is appealing against the decision. Herein lies the issue: the 1979 Act recognises that there can be adverse reactions to vaccines that can cause severe and irreversible damage to patients. Since the Act was passed, around 900 people have been awarded compensation, which is a very small number when compared with the 650,000 children vaccinated every year. Compensation can range from £120,000 into the millions.

The pandemic swine flu vaccine was part of the 1979 Act from September 2009 until it was removed by the Vaccine Damage Payments (Specified Disease) (Revocation and Savings) Order 2010. That is preventing Lucas from claiming compensation, as he had the vaccine administered outside that period, in January 2011. If the pandemic swine flu compensation period was simply extended to April 2011, Lucas and others who had adverse reactions could claim compensation for the reaction to the vaccine.

[Julian Sturdy (York Outer) (Con)]

The hon. Gentleman is making a powerful argument, and I congratulate him on securing the debate. My constituent Ben Foy sadly suffers exactly the same symptoms as Lucas, and the DWP has acknowledged that there is a link between Ben’s swine flu vaccination and the development of narcolepsy and cataplexy. The Department appears to acknowledge that he is disabled as a result, as Ben is in receipt of disability living allowance, but it is saying that his case is not severe enough and there are no grounds for that disability compensation. As can be imagined, the family feel that that is a complete insult. Does the hon. Gentleman have any thoughts on that?

[Stephen Twigg]

I am grateful to the hon. Gentleman for making that point. While the focus of my remarks has been on the compensation period, there is clearly a related issue with the attitude of the DWP on the severity of disability. I concur with the important point that he raised on behalf of his constituent. A number of other families in other constituencies around the country are also affected, and I welcome the colleagues from all parties who are in the Chamber for this debate.

It is worth reiterating the point that the hon. Gentleman just made: the Government have accepted that there is a causal link between the vaccine and narcolepsy. Since 2014, the Department of Health has had responsibility for the 1979 Act, which is a welcome change. Bringing the Department of Health into the process should ensure that responsibility for the legislation is controlled by health professionals, rather than benefits officials. That shift of responsibility can be a good thing for constituents like mine who have outstanding compensation claims. I am asking the Department for Health to extend the compensation scheme to make it possible for all citizens who have life-changing conditions as a result of vaccines to claim compensation. That is not only important for the individual families suffering as a consequence of adverse reactions; it is crucial to ensuring public confidence in the vaccination system.

[Peter Dowd (Bootle) (Lab)]

Does my hon. Friend agree that the quality of life of people who have been affected or damaged by the vaccine is dreadful and quite deplorable? We should be doing something as soon as we can to sort that out.

[Stephen Twigg]

I thank my hon. Friend for making that point. He is absolutely right. In preparing for today, I was struck that some of the aspects of this subject are technical in character. It has been a little like going back to school and doing biology again in learning some of the terminology. What lies at the heart of the debate, however, is the lives of children and their families. I raised this issue on behalf of my constituent because I want to ensure that he and his family have the quality of life that any family should have the right to expect.

I was about to say that extending the compensation scheme is important not only as a matter of compassion and decency for the families concerned, but to ensure public confidence in the system of vaccination. There is barely a one in a million chance that people will react badly to a vaccine, so if it was certain that, were that to happen, there would be compensation, that would not only be right for the affected families but increase confidence in vaccination.

In conclusion, I am aware that the Department of Health has for some time been in discussions with the lawyer representing Lucas. I thank the Department for listening to my constituents’ concerns, but, on behalf of Lucas and his family, I urge the Minister to do everything she can to ensure that those discussions are brought to a successful conclusion.

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

It is a pleasure to serve under your chairmanship, Mr Chope. I congratulate the hon. Member for Liverpool, West Derby (Stephen Twigg) on securing this debate. I am aware that he has sought to support his young constituent and his family on this difficult matter for a number of years, and we have written to each other about this case previously. I was very pleased that, despite this sad case, the hon. Gentleman emphasised his general support for vaccination programmes. We are lucky to have a world-class national immunisation programme. Such programmes are a vital way of protecting individuals and the community as a whole from serious diseases, so I am grateful for his sentiments in that regard.

The hon. Gentleman referred to the global swine flu pandemic and the arrangements for licensing drugs during a pandemic. Flu pandemics are natural phenomena. They occur when a new flu virus emerges and spreads around the world and most people do not have immunity. Each pandemic is different. The nature of the virus, the population groups most likely to be affected and the impact cannot be known in advance. It is impossible to predict the severity of a new virus strain. Large swathes of the population can become infected over a relatively short period if transmission spreads rapidly. The potential impact of pandemic flu makes effective measures to limit the spread and morbidity of virus infection a public health priority. Countermeasures are employed in combination. Vaccination, when possible and appropriate, is one such countermeasure.

Thankfully, the H1N1 strain of swine flu turned out to be relatively mild, but we should not forget that it still caused more than 450 deaths in the UK. Pandemrix, the vaccine that the hon. Gentleman’s constituent received, was developed specifically for use in a flu pandemic when the number of lives lost and people with serious illness could not be known. Once a new pandemic strain emerges, it takes several months to produce batches of a specific vaccine to protect against it. As a pandemic strain of flu generally spreads rapidly, there is of course little time to undertake large-scale clinical trials. To address such constraints, the European Medicines Agency has a mechanism for the fast-track licensing of pandemic vaccines to address the immediate public health threat. The mechanism includes accelerated clinical trials while permitting the use of the vaccine in advance of receipt of all the required clinical trial data.

It would be unfeasible to conduct very large clinical trials in the midst of a pandemic, when time is of the essence, to identify risks that are very rare. Indeed, regardless of the pandemic situation, very rare potential risks can generally be identified only after a medicine or vaccine has been licensed and used in the wider population. All Governments have a responsibility to protect public health. The decision to commence the swine flu vaccination programme, which was made by previous Ministers in 2009, would have been based on the expert advice of the Joint Committee on Vaccination and Immunisation, an independent expert committee that advises Ministers in the Department.

Pandemrix was used against H1N1 swine flu in the UK from October 2009 to March 2010. It was used again on a limited basis in the following flu season until March 2011. The hon. Gentleman has noted that his constituent received Pandemrix in January 2011, during the seasonal flu vaccination programme for winter 2010-11, rather than the specific response to the swine flu pandemic in 2009-10. As he noted, that is highly relevant. He summarised his constituent’s experience and described the impact that narcolepsy and cataplexy can have on an individual. I very much assure him that I do not underestimate how distressing narcolepsy can be, for both those with the condition and their carers. Indeed, I was talking to a constituent about that very issue only this past weekend. I fully recognise the impact that narcolepsy can have on quality of life. It is important that anyone with narcolepsy, with or without cataplexy, receives the appropriate care and attention so that they can manage their illness.

At the time Pandemrix was used in the UK, no potential association with narcolepsy was known. Following suggestions of a possible association with narcolepsy, its use was stopped in the UK in March 2011, on the advice of the EMA. The hon. Gentleman referred to the Vaccine Damage Payment Act 1979, which was designed to help to ease the burdens on those individuals to whom, on very rare occasions, vaccination has caused severe disablement. The degree of disablement is assessed on the same basis as for the industrial injuries disablement benefit scheme. It would not be appropriate to comment on the case raised by the hon. Gentleman.

Despite the title of this debate, I would like to clarify for the House that the vaccine damage payment scheme is not a compensation scheme. The hon. Gentleman referred to compensation ranging from £120,000 to millions of pounds; in fact, the VDPS provides a one-off, tax-free lump-sum payment of £120,000. The scheme does not prejudice the right of the injured person to pursue a claim against the manufacturer of the vaccine. As the hon. Gentleman alluded to, his constituent is pursuing that course of action and, again, it would not be appropriate for me to comment further on that case.

[Stephen Twigg]

I appreciate that the Minister cannot comment on an individual case in this forum and that the discussions are ongoing, but is she able to comment on the affected time period? It is the definition of the time period that is denying my constituent access to the scheme.

[Jane Ellison]

I am aware of that and will address it shortly, although I suspect the hon. Gentleman might be disappointed by what I have to say.

A VDPS payment is for those who are severely disabled as a result of a vaccination against those diseases listed in the 1979 Act and those that have been specified by statutory instrument since then. As I have already mentioned, the hon. Gentleman noted that his constituent received Pandemrix in January 2011; however, the Act relates to diseases, not vaccines. The list of specified diseases covered by the Act includes pandemic influenza A (H1N1) swine flu, where vaccination was administered from 10 October 2009 to 31 August 2010—the period of the swine flu pandemic. That was a temporary addition considered appropriate by Ministers at the time. The hon. Gentleman’s constituent’s vaccination was administered in January 2011, so it was not given for pandemic swine flu, which is covered by the Act.

Sudden Adult Death Syndrome

Stephen Twigg Excerpts

Monday 25th March 2013 Westminster Hall

[Steve Rotheram]

Yes. Certain people expect us, as parliamentarians, to know everything about everything, but actually we do not know an awful lot about an awful lot. I hope that if it does nothing else, today’s debate and the publicity that will be generated through the campaigners will ensure that people are aware of exactly the point that the hon. Lady raises.

[Stephen Twigg (Liverpool, West Derby) (Lab/Co-op)]

I join in the congratulations to my hon. Friend, to the OK Foundation and, indeed, to the Backbench Business Committee. He mentioned that the OK Foundation has funded every primary school in Liverpool to have a defibrillator. Does he agree with me that that sends a powerful message throughout the country that that policy should be adopted in all our schools?

[Steve Rotheram]

My hon. Friend and city of Liverpool colleague will know that where Liverpool leads, others often follow. The hope is that other people will recognise that what Liverpool has done is progressive. It has been done with the help of the mayor of Liverpool, the city council and, of course, the OK Foundation and it will demonstrably save lives. We do not know when that will happen, of course, because we do not know when someone will have an attack, but at some stage, that provision will save someone’s life. That will be a tremendous legacy of all the work and campaigning that the OK Foundation has done.

What is perhaps even more heartbreaking than the sudden loss of life, if such a thing is possible, is the sudden loss of life when it is avoidable. There is a quick, simple and extremely effective device that can save lives. The treatment will not cost millions of pounds in research or development, nor is it a procedure that people require a medical degree to administer. Instead, it is as simple as first aid training in schools and defibrillators in public buildings.

At this point, I declare an interest: I unashamedly want there to be a defibrillator in every public building, in much the same way as there are fire extinguishers and fire alarms in every building. As the London Ambulance Service pointed out in its briefing for today’s debate,

“56 people died in London from a fire in 2011 compared with 10,000 Londoners who suffered an out of hospital cardiac arrest—yet fire extinguishers are statutory in every building—and defibrillators are not”.

We have them here in Parliament. If they are good enough for us in Parliament, they are good enough for every other public building.

I will shortly come on to the main argument with regard to my desire for defibrillators in public buildings, but before I do that, I am keen to touch on another element of tackling SADS: screening. Three young people die each week from SADS, and in more than half of the cases the cause is a genetic problem affecting the heart. I believe that targeted expert assessment of families in which there is a high risk of inherited cardiac disease or in which there has been a sudden unexplained death will lead to a considerable decrease in the number of SADS victims annually. No one is claiming that that is a panacea; it is simply a vital step in the diagnosis of those most at risk.

I praise organisations such as Cardiac Risk in the Young, which is subsidising screening for young people, ensuring that those who believe that they need an ECG—electrocardiogram—can afford one. The OK Foundation and others are also doing that, but screening should be more widely available.

--- Later in debate ---

[Andrew Percy]

I, too, congratulate my hon. Friend’s constituents. I always think that it is a bit easier for us, as MPs, to bang the drum and to get people behind us, but it is fantastic for residents to do so and to raise such an amount of money, so I pay tribute to them as well. A lot of that is going on around the country, but frankly there needs to be more.

Our bid in north Lincolnshire was also to ask schools to filter training down to young people, as part of the deal of their accepting a defibrillator paid for from the grant, so it does not only relate to use on school sites. I hope that if there is a cardiac arrest—not that I hope for one, but if there is—a young person from north Lincolnshire with that training will be there, so that they can put their training into use, although I would prefer them not to have to do so. The Scunthorpe Telegraph, the local newspaper, rang me today to say that it is quite keen to get behind that and might want to run a campaign about it, so I shall wait to hear more. We can try to use the National Citizen Service to filter down that training.

[Stephen Twigg]

I congratulate the hon. Gentleman on his excellent speech. He mentioned the Scunthorpe Telegraph, and does he agree that the media have a crucial role? Will he join my hon. Friend the Member for Liverpool, Walton (Steve Rotheram) and me in praising the brilliant work done by the Liverpool Echo with the OK Foundation?

[Andrew Percy]

Members of Parliament are never backward in coming forward to praise their local newspapers, not least in the hope that it guarantees them a friendly quote next week, but the hon. Gentleman makes an important point. Newspapers can be part of our going out to challenge—I do not want to say “shame”—businesses. I am a Conservative and I love businesses, but businesses make profits and do so on the back of their workers, to whom they have responsibility. [Interruption.] Well, I think that I am a Conservative. Of course, I am; or just the Brigg and Goole party these days, perhaps. [Interruption.] Well, I am certainly not a Liberal Democrat—no offence to my hon. Friend the Member for Southport (John Pugh)—because my views on Europe count me out.

Newspapers have a responsibility to go to businesses and challenge them, particularly big businesses. I understand that defibrillators would be expensive for smaller ones and those employing only one or two people, but we should ask big businesses, “What are you doing for the welfare of your workers? Where are your defibrillators?” Newspapers such as the Liverpool Echo and the Scunthorpe Telegraph have an important role to play in that.

Congenital Cardiac Services for Children

Stephen Twigg Excerpts

Thursday 23rd June 2011 Commons Chamber

[Stephen Twigg (Liverpool, West Derby) (Lab/Co-op)]

I congratulate the hon. Member for Pudsey (Stuart Andrew) on securing this important debate. I have the privilege to have in my constituency the hugely impressive and world-class Alder Hey children’s hospital, which I am delighted is included in all four options in the motion. I would express some concern, however, were the motion to be agreed to and were we to go beyond those four options. I hope that Alder Hey would be included in any further options that the joint committee would consider and consult on.

Alder Hey’s cardiac unit treats children with all forms of heart disease, not only in Liverpool and the wider Merseyside area, but those travelling from the wider north-west of England, north and mid-Wales and the Isle of Man. The total catchment area for children using Alder Hey’s cardiac unit covers about 7 million people, so many people already travel very long distances to use the excellent services there. Since 2006, the hospital has treated more than 4,000 patients for cardiac conditions and performed surgery on more than half of them. I spoke to the hospital this week in anticipation of today’s debate, and it expects that the concentration of surgery at Alder Hey will further increase demand, and has built that into its current plans. Alder Hey is on track to have a brand-new hospital with a children’s park. The plans are very exciting and have got a strong commitment from the local community in my constituency in West Derby. The hospital is strengthening its services. For example, it is investing in the existing team to add a sixth cardiologist and an eighth intensivist, increasing its theatre capacity to enable the delivery of 637 cases per year, and it has already achieved the minimum required activity for this operational year of 447 cases.

Members have spoken about the balance between our responsibilities to consider the national picture and our constituency responsibilities. Happily I am in a position to argue that the proposals work both in terms of national policy and for my constituents. The Children’s Heart Federation has highlighted some of the benefits of the Safe and Sustainable review’s proposals, which have been mentioned by hon. Members today: minimal cancellations and short waiting times for surgery; better outcomes from surgery; and an end to high-risk rotas in which a surgeon in a small team covering for a colleague on leave can operate all day and be on call all night several days running. As has been pointed out, these changes have been put forward by clinicians, and I would urge the House to tread with great care in jeopardising the outcome of such a clinician-led review. We must remind ourselves that the review does not propose the closure of any centres, and would instead concentrate surgery in the centres where it can be performed safely.

I finish with a broader point that the Minister might like to reflect on. This review is a good example of evidence-based policy making in the NHS. Perhaps we can have more of that as the process of NHS reform moves forward.