Children’s Palliative Care

Jim Shannon Excerpts

Monday 1st July 2019 Commons Chamber

[Dr Caroline Johnson (Sleaford and North Hykeham) (Con)]

The subject of tonight’s debate is not an easy one to talk about, but it is very important. This evening, I am going to talk about the 49,000 children throughout the UK who have life-limiting conditions.

As a consultant paediatrician, I have looked after quite a number of these children over the years. I have been the person who has made that diagnosis, who has given that devastating news to families, who has looked after these families during various different points of the journey and, indeed, who has been there in those final minutes and hours. Through that time, I have watched as some of these families have just about managed, but others have really struggled to cope at all and have gone from crisis to crisis. For me as a paediatrician, the opportunity to be a politician gives me the chance to stand here and advocate for those families and for those children and to use this platform—this House—as a vehicle for change, and to make these treatments and the care that these children receive much better.

Children’s palliative care is not, as it is often misrepresented to be, only about the care that someone receives at the very end of their life: it is about improving the quality of their life while they are living with that life-limiting condition from the point of diagnosis. I shall take as an example a child with Batten disease. A child with Batten disease may present as apparently healthy, but they have a gene that will ultimately cause neuro-degeneration. So they will lose the skills that they had—the walking, the talking. Their skills will go backwards, until they become increasingly dependent on their families. Often, they die of chest infection.

The care for those families involves helping the child, the family and the siblings to understand the diagnosis and prognosis, providing support such as physiotherapy to keep the child mobile for as long as possible, providing home adaptions to train their parents in how to use things such as Mic-Key buttons, to provide tube-feeds and to use wheelchairs and hoists in the care of their children, and helping them with medical things such as seizure management, giving medication and speech therapy, as well as with how to navigate the benefits system, applications for a blue badge, education and when to move from mainstream into more specialist provision.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Lady for bringing this matter to the House. There will not be a single elected representative who is not aware of someone who has been through this. Is she aware that the money that each children’s hospice has to spend each year to meet the needs of seriously ill children and their families has grown to an average of £3,681, which is a 4.5% increase between 2016-17 and 2018-19, faster than the rate of inflation, yet the funding has been cut or frozen for each of the last three years, leaving children’s hospices struggling to make ends meet? Does she share that concern, which we all have?

[Dr Johnson]

I thank the hon. Gentleman for his intervention. I do indeed share his concern and will come to some of those figures in a moment.

To return to the care that is provided during the palliative care process, finally, the care will indeed be about end of life care and bereavement counselling. Children’s hospices throughout the United Kingdom provide some of this fantastic care. They have specialist medical, nursing and other professional staff and volunteers, and I pay tribute to them, as I know other Members do, for their dedication and the fantastic work they do.

NHS Long-Term Plan: Implementation

Jim Shannon Excerpts

Monday 1st July 2019 Commons Chamber

[Matt Hancock]

I certainly will. I also draw my right hon. Friend’s attention to an announcement, which we made last month, to allow local hospital trusts to request property from NHS Property Services so that it can be transferred to the trusts if it can be used better and more flexibly locally, in the way that the hub I saw at Budleigh Salterton absolutely delivers. I can also see such an opportunity for the potential hub at Ottery St Mary, which was a community hospital and has enormous promise for delivering services closer to the community.

[Jim Shannon (Strangford) (DUP)]

I thank the Secretary of State for the statement and the substantial moneys that the Government have committed to the NHS long-term plan, particularly given the need for the cancer strategy to be fully implemented. On rare diseases, will he confirm that drugs such as Orkambi, Spinraza and medicinal cannabis will be simple to apply for and accessible for those who desperately need them now, when time is not on their side?

[Matt Hancock]

I understand the importance of those drugs. Each one is in a slightly different part of the process. We have opened up availability of medicinal cannabis. Indeed, I was talking this morning to the head of NHS England to ensure that our plans to normalise access to medicinal cannabis for those with a clinical need for it can be brought forward. The hon. Gentleman should expect to hear more news soon on the progress that NHS England and the National Institute for Health and Care Excellence have made. On Orkambi, we are still engaged with the company, Vertex, to try to bring that to patients in a cost-effective way. I greatly hope that Vertex will make some progress.

Heated Tobacco

Jim Shannon Excerpts

Wednesday 26th June 2019 Westminster Hall

[Mr David Jones (Clwyd West) (Con)]

I beg to move,

That this House has considered Government policy on heated tobacco.

May I say how pleased I am to serve under your chairmanship, Mr Gray? I immediately declare my interest as an honorary life fellow of Cancer Research UK.

Smoking remains a terrible public health problem in the United Kingdom. The Government recently referred to it as the “continuing tobacco epidemic”. It is the country’s principal cause of cancer and single greatest cause of preventable illnesses and avoidable deaths. Some 7.4 million people in this country smoke, and smoking is the cause of around 100,000 deaths every year. There is a mistaken perception that the problem of smoking has largely been addressed, which might be because smoking, like many other societal ills, does not affect everyone equally. The smoking rate remains around 25% in many of the poorest areas of the country, whereas it is around 5% in more prosperous areas. In my constituency of Clwyd West, the rate is above the national average, at 17% to 18%.

The Government are to be commended for their achievements on smoking, and indeed for their ambitions for the future. Since 2010, Conservative-led Governments have brought the smoking rate down from 20.2% to 15.5%, which is a significant accomplishment. The Government are to be applauded for their ambition to lower smoking rates to 12% by 2020. Although they have not set yet a target date, the Government aim eventually to create a smoke-free generation, which they define as less than 5% of adults smoking. However, the challenge today is far greater than it was a decade ago, because smokers with a higher level of motivation to quit will have done so already. Those who remain have withstood years of public health campaigns and societal pressures, as well as the rise of e-cigarettes as an alternative to smoking.

[Jim Shannon (Strangford) (DUP)]

I congratulate the right hon. Gentleman on bringing this important matter to the House for consideration. Does he agree that advice must be provided first about smoking cessation, rather than about vaping or any other alternative method? Does he also agree that although there are no long-term indications of the effects of vaping, whether burned or heated, the chemicals that are used will not be neutral, and there will therefore always be an element of concern and a need for greater research?

[Mr Jones]

Clearly, the ideal is for people to give up smoking altogether, but there are ways of reducing it. I will go into that in my speech. The hon. Gentleman makes a point to which I shall also refer: there is a need for research on the effects of alternatives to combustible tobacco.

E-cigarettes have had a revolutionary effect on efforts to reduce smoking rates in this country, and credit must go to the Government for facilitating that. E-cigarettes have had a highly positive impact on helping smokers to quit. In 2010, a particularly enlightened member of the behavioural insights team, David Halpern, influenced the Government’s decision not only to resist banning e-cigarettes—other countries were poised to do so—but to seek deliberately to make them more widely available. David Halpern advanced the principle of harm reduction: it is more effective to give somebody a reduced risk product than to insist unrealistically on immediate total abstinence. An expert in harm reduction, Professor Gerry Stimson of Imperial College, has supported that argument, pointing out that it is easier to persuade people to do something if that thing is enjoyable rather than a painful chore. He said:

“For those trying to stop smoking, e-cigarettes have profoundly changed the experience. For the first time quitting cigarettes is no longer associated with being a ‘patient’ and personal struggle.”

Living with Dementia

Jim Shannon Excerpts

Tuesday 25th June 2019 Westminster Hall

[Dr Philippa Whitford (Central Ayrshire) (SNP)]

I, too, pay tribute to the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) for securing this crucial debate.

As has been said, the number of people suffering dementia in the UK is 850,000—I apologise, because I have already said “suffering” instead of “living with”, but many people are suffering. We talk about what is being done in pockets and what is being done well, but that is not happening for all those 850,000 people. Some of them are stuck in their houses, some are tutted at by people behind them in supermarkets and some are made to feel unwelcome in certain places. Until we can say that all 850,000 of those people are living well with dementia, we have not done our jobs.

There are 90,000 people living with dementia in Scotland, and more than 3,000 of them are under 65. The impact on those people has been touched on. It is estimated that only two thirds of people with dementia have been diagnosed, and that means that we do not actually have a handle on the scale of the problem.

Alzheimer’s—a term that many people use interchangeably with dementia—is the commonest form of dementia, but there is also vascular dementia; in many patients, it is mixed. A rarer form of dementia, Lewy body dementia, causes a particular type of dementia, with less memory loss but big impacts on movement. In particular, it causes hallucinations, and our police and firefighters should know about that. If they have had 50 calls from the same patient, it may be not because there is a burglar, but because that person is having hallucinations of a burglar. That is why we need to integrate all our public services, so that they learn from each other. Other conditions, such as HIV and Parkinson’s, can also lead to dementia. Many people know about memory loss, but there is not so much awareness of the difficulties that dementia creates with making decisions, concentrating and spatial awareness. People with advanced dementia have real difficulty moving around in our environment, and the situation is even worse if certain parts of the brain are impacted.

Unfortunately, at the moment treatment is very limited; there have been no new drugs for dementia since 2002. The most commonly used drugs are those that stop the breakdown of acetylcholine, a neurotransmitter that sends messages from one brain cell to the next. Those drugs can improve concentration, but they do not work against the underlying causes of dementia, partly because we still do not understand all the underlying causes. We see the breakdown of proteins, we see bits of proteins appearing in the brain and we see brain cells getting tangled up, but what exactly is causing all that? We need to upscale research to a totally game-changing level to understand the cause so that we can try to prevent and treat dementia. In Scotland in 2013, the Scottish Dementia Research Consortium was set up as an umbrella organisation to try to bring all such projects together. As well as laboratory research into the cause and treatment of dementia, research into a human rights approach to those living with dementia is critical in improving support and care.

We are also looking at adapting our health and care systems. As my hon. Friend the Member for North Ayrshire and Arran (Patricia Gibson) mentioned, two years ago Scotland published a national strategy for dementia, which is the country’s third such strategy; the first was in 2010. This one will focus on the whole pathway, from providing post-diagnostic support right through to end of life, and including community co-ordinators.

Dementia is the disease that our generation fears. My grandmother feared tuberculosis—people did not even name it; they called it “consumption”—and the people I looked after as a surgeon feared cancer. What many of us now fear is losing ourself, as we have heard described so graphically this morning, or losing the person we have loved all our adult life.

Providing social care is critical for those living with dementia and for their families. In Scotland, we have spent more on social care, which allows us to provide free personal care. That means that if someone can be supported at home to live with independence and dignity, it will not cost them or their family. Since Frank’s law came into effect in Scotland just two months ago, that has also applied to those under the age of 65. The care they receive is thus related to their illness and particular needs, without a bizarre cut-off at 65 that prevents a 64-year-old from receiving the care that they require.

The problem is that we are struggling to recruit people as carers, whether in care homes or in home care. Most people want to be cared for in their own home, but it is very labour-intensive. Some aspects of the situation are being made worse by Brexit. In parts of Scotland, such as the highlands, 30% of carers are from Europe, so there will be an existential problem for care services. We also need to turn caring into a proper professional career, with training, career development and a decent salary that rewards carers for the very difficult job that they do.

It is critical that we support a person with dementia along their entire journey. All we have to do is to sit in this Chamber and imagine ourselves in that clinic, getting that diagnosis, and then going home and finding that there is nothing—no information, no support and no one to answer questions. The integration agenda, which is further down the line in Scotland, is linking things up. We have linked our NHS back into integration since devolution, but integrating healthcare and social care is a lot harder; social care is much more fragmented, because it is provided by multiple private companies.

We have multiple projects going on in Scotland that are often recognised through Scotland’s dementia awards. My local health board has won one such award for its “Bridging the gap” project, which provides a dementia support adviser to liaise between hospital, community and family along the patient’s journey. In Wishaw, there is a theatre buddy scheme, so that if someone with dementia requires surgery, their buddy—they could be a worker or a relative—is there at the last moment before the operation and when the patient wakes up. One project that I particularly like is the provision of assistance dogs that have been trained by prisoners in Castle Huntly, which involves a double win: the prisoners are proud that they are helping someone in the community, and those living with dementia have assistance dogs.

However, for those who are living with dementia now, the most important thing is to make them feel welcome and included in the communities that we live in. In 2016, I was lucky enough to be invited to speak at the launch of Dementia Friendly Prestwick, which is led by a very impressive team, particularly Julie and Lorna, who are leading lights within it. I had not done any of the work required to set it up; I was just asked to give a speech at the launch. However, I was inspired by that launch to set up Dementia Friendly Troon and Villages, Troon being the community that I live in.

In Prestwick, a relaxed cinema has been running for three years. There are subtitles, the cinema is free, it is not as dark as most cinemas, they serve home-baked food and they have even had a local potter make double-handed cups. The baking is all done by Berelands House, one of our local nursing homes. The cinema was a finalist in the Scottish Dementia Awards, and the sound and screen are of really high quality; I went to watch one of the movies myself. That service is provided by Friends of the Broadway, the Broadway being an old cinema in Prestwick.

In Troon, we have relaxed golf and an allotment, which is supported by other gardeners. We started by asking, “Why do we love living in Ayrshire, and how do we help people to hang on to that for as long as possible?”

[Jim Shannon (Strangford) (DUP)]

First, I apologise for not being here at the start of the debate; I had a meeting with the Turkish ambassador, so I just could not be here earlier. Does the hon. Lady agree that greater support should be provided for those living with dementia to enable family members and other close relatives to take care of their loved ones—that is really important—for as long as possible before putting them into care facilities?

[Dr Whitford]

I absolutely agree; care should be provided in the home, if at all possible. That is where we would all want to be. The hon. Member for Ayr, Carrick and Cumnock (Bill Grant) mentioned the hotel room that uses colour as well as technology to make it easier for a person with dementia to stay in it, as well as making it easier for their carer to be there.

Guided walks are provided in Troon. Troon promenade is being redesigned to make it easier to move around on, and Troon is part of Cycling Without Age, which provides cycle rides along the promenade on trishaws every Sunday afternoon. Staff at our local airport, Prestwick, have received the training to make it a dementia-friendly airport. That all depends on Alzheimer Scotland, which provides training to staff at the airport and at other, smaller businesses, such as hairdressers and cafés.

We are the ones who have to make the change. All we are asked to do is be patient, rather than tutting behind someone in a supermarket. In our area, we have managed to get two supermarkets to provide relaxed lanes where people will not be rushed, but will be invited and chatted to as they come through. Let us all be less hectic, and let us make everyone feel welcome in our communities.

--- Later in debate ---

[The Minister for Care (Caroline Dinenage)]

As ever, Mr Paisley, it is a great pleasure to serve under your stewardship. I thank the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) for securing this important debate, the hon. Member for Cambridge (Daniel Zeichner) for supporting her in doing so, and the Backbench Business Committee for allowing time for it. I also thank all the other Members who have taken part in the debate, and in some cases shared very personal journeys and stories about their family’s experiences with dementia and, indeed, some interesting and inspiring best practice from their constituencies—things that other areas can learn from.

I also thank the hon. Member for Oldham East and Saddleworth for her personal commitment and dedication to people living with dementia, both through her work on the all-party parliamentary group on dementia and in her constituency. She is so committed to making Oldham East and Saddleworth a really dementia-friendly place to live; she sets an excellent example of what we as Members of Parliament can do in our own communities, and I welcome her vision of making Westminster the first dementia-friendly Parliament. I will do everything I can to support her in that endeavour, because I know that her passion is driven by her experience of having a close family member living with dementia.

Other Members have spoken about their own experiences, and I have also had two very close family members living with dementia: my grandmother and my uncle, who passed away just before Christmas. I have experienced at first hand the impact that dementia has, both on the person who is living with it and those who love and care for them. Hon. Members from across the House have spoken about the importance of carers, and I have seen at first hand the impact that caring for my grandmother had on my mum—on her relationships, her professional life and her health and wellbeing. Those carers’ commitment should never be taken lightly. A dementia diagnosis is more than a diagnosis for that individual: it is a diagnosis for the whole family, their loved ones, their community and their workplace.

[Jim Shannon]

In my constituency, 1,152 people live with dementia. As the Minister rightly said, it affects a lot of families as well as the wider family circle. Has she given any consideration to respite care for those families to give them a break from the physical, emotional and mental pressure that they are under?

[Caroline Dinenage]

Respite care was one of the themes of the carers action plan that we published last year. SCIE is putting together guidance for local authorities on how they can best provide that crucial respite moment for those brilliant carers. [Interruption.]

A diagnosis is very much for an individual, but also for their families and loved ones and for their communities and workplaces. When those come together, it is possible to live well with dementia, as my hon. Friend the Member for Witney (Robert Courts) said. Such personal experiences make me passionate about my responsibilities as a Minister. The hon. Member for Halifax (Holly Lynch) challenged me to continue to push the Government to keep dementia as a priority, and I always will. I am proud of the Government’s commitment to deliver on the dementia challenge 2020 in full to make this the best country in the world to live for anyone with a dementia diagnosis.

The challenge aims to transform the lives of people with dementia, as well as their carers and their families, through better awareness, care and research. We have made significant progress as part of the challenge, but we know, as we have heard today, that there is still much more to do. We have already started our work on our strategy for the period beyond 2020. This is not something that finishes in 2020. It is simply the start of the next phase and we will publish our thoughts on it early next year.

One of the key successes of the challenge has been improved diagnosis. We are meeting our ambition, and today two thirds of people living with dementia receive a diagnosis, but we clearly still have some way to go. Of course, not everybody wants a diagnosis, but we know that a timely diagnosis enables a person with dementia to access the advice, information, care and support that can help them to live well with the condition and remain independent for as long as possible.

We are focusing on reducing the variation in local dementia diagnosis rates. There is a real geographical variation, and targeted support to identify and engage the areas most in need of assistance will really help. Reducing the gap in diagnosis rates will ensure that people with dementia have consistent access to a diagnosis wherever they are in the country. We also know that receiving good quality care improves the lives of people with dementia. Equipping our health and social care workforce with the skills that they need is therefore crucial to the quality of care for those living with dementia.

Since 2012—the hon. Member for Bradford South (Judith Cummins) mentioned this—1 million episodes of the tier 1 dementia awareness training have been completed by NHS staff, and more than 1 million care workers completed the care certificate, or common induction standards. We continue to work to meet our commitment that staff have the training appropriate to their role. We want to see more people doing the tier 2 training, which is much more robust, so we are exploring options to see how we can increase take-up for anyone who needs it.

Cystic Fibrosis Drugs: Orkambi

Jim Shannon Excerpts

Monday 10th June 2019 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Member for Sutton and Cheam (Paul Scully) on setting the scene so well for us, and all the right hon. and hon. Members who have made such fantastic contributions on a subject in which we all have a deep interest.

This is an issue that I have spoken on many times in this Chamber and indeed outside it. I have received emails from constituents with photos of their children, begging me to do something to give these precious little ones a better quality of life. If ever we needed to be reminded of the importance of this for the children, as every hon. Member has said, that is such a reminder.

Let us be clear: cystic fibrosis is not only, tragically, a life-limiting disease, but a disease that massively impacts on the quality of life and the life experiences of the sufferers and their families, because the families live the children’s tragedy as well. Cystic fibrosis is one of the UK’s most common life-threatening inherited diseases. It is caused by a defective gene carried by one person in 25, usually without their knowing it. That is more than 2 million people in the UK, and if two carriers have a baby, the child has a one in four chance of having cystic fibrosis.

Around 10,400 people in the UK have cystic fibrosis; that is one in every 2,500 babies born. It affects some 100,000 people in the world. According to the most recent report from the UK Cystic Fibrosis Registry, based on people with CF who were recorded as alive from 2013 to 2017, half of people born with cystic fibrosis in 2017 were expected to live to at least 47, but the 132 people with CF who died in 2017 had a median age of 31. That is a massive difference and we cannot ignore it.

Parents are begging me, begging us, begging this House to ensure that those years are of the best possible quality. After numerous trials, some carried out with Northern Ireland constituents, Orkambi seems to be a drug that does exactly that for many people—enabling the best possible quality of life. My most recent correspondence from Richard Pengelly, the permanent secretary for health in Northern Ireland, outlined clearly that he does not have the power to do what we all need him to do and what he wants to do:

“Let me say that I share your disappointment that the progress in making this drug more widely available has not advanced as we had hoped. At the heart of this matter is the inability of the manufacturer Vertex to come to agreement with the relevant UK Health Technology Assessment bodies.”

[Mr Gregory Campbell (East Londonderry) (DUP)]

When we have the most senior civil servant in Northern Ireland, along with NHS England and virtually everyone else who has any dealings with the issue, saying, “Look, we need action, we are powerless to move,” does that not throw the ball firmly back into the Government’s court to resolve the matter with the company?

[Jim Shannon]

I thank my hon. Friend for those words. This is not an easy subject for the Minister to respond to, but it is one that has captured the interest of us all on behalf of our constituents, and we need the Government to grasp that and move it forward to the next place. We look for that.

If the Republic of Ireland is able to come to some arrangement with Vertex, if the Scottish Parliament is able to do similar and if, according to the background information, it is possible to go to Argentina and buy a year’s course of drugs for one patient at £23,000, compared with £104,000 for a year’s supply here, that tells me that something can be done if we had the willpower to do it, as my hon. Friend the Member for East Londonderry (Mr Campbell) has said. We can look around at our UK neighbours and look toward Scotland, whose Government have reached an agreement with Vertex.

The permanent secretary went on to say:

“In the absence of this positive NICE determination, the Health and Social Care Board…may take into account guidance produced by other appropriate HTA”—

health technology assessment—

“bodies based in other UK countries such as the Scottish Medicines Consortium…when making decisions about access to new drugs.”

I say to the Minister that I have made a comment about the Republic of Ireland, but I also make a comment about Scotland, because I think that the process enables us to use what Scotland has done as an example for us elsewhere.

The permanent secretary continued:

“The Department is aware that Vertex have re-applied to the SMC for consideration of approval for Orkambi, and that in the meantime there is currently limited access to the drug in Scotland via their PACS”—

peer approved clinical system—

“Tier 2 scheme, which is broadly analogous to our Individual Funding Request Process.

If Orkambi is approved by the SMC, details of the funding models in place, which are currently bound by commercial confidentiality, will be shared with the other UK countries. This will allow for us to have full access to the evidence and costs associated with this therapy and will inform any further decisions on access.”

The hon. Member for Colne Valley (Thelma Walker) referred to the destruction of some medications. Whatever the reason for that was—whether they had run out of time or whatever—I think it is disgraceful that people have destroyed some medicines rather than letting them be used by the general public, by those who need them. If that is not unacceptable in this day and age, I do not know what is. It is absolutely disgraceful; it really annoys me.

It is simply terrible that we are in a position where our hand are tied. I say again to the Government: look to your Scottish counterparts. I firmly believe that we can and must do more from this place and that that must start with acknowledging that the NICE guidelines do not currently take into account the differences, when it comes to pricing, between treatments for rare diseases and a new antibiotic strain. We need a new form of assessment for rare diseases and I would like to see that taking place as soon as possible to ensure that the mummy of my two-year-old constituent, who is asking me for this drug in order to give her child as normal a life as possible, can look forward to securing the best for her child. That is what every Member has said here today on behalf of their constituents.

Again according to the background information that I have, in May 2019 the Government said in response to a parliamentary question that discussions between Vertex, NHS England and NICE were ongoing. You know something? They have been ongoing for more than a year. Let’s get them sorted. Time is passing fast. I am joining colleagues in asking the Department to make the administrative changes necessary to end the Orkambi stalemate with NICE and to put in place a body designed specifically to address rare disease patients and their needs. We acknowledge that NICE does a tremendous job in ensuring that safe, cost-effective medicines are available on prescription, but we need a different set-up for those whose illnesses are very different and for the sake of my constituents and those represented by other MPs who have spoken today. I am asking that those decisions be taken and the changes made to enable Richard Pengelly, the permanent secretary at the Department of Health in Northern Ireland, to do what he knows he needs to do and allow the prescription of Orkambi to those whose lives would be radically altered and enhanced by it. It would give them life-changing opportunities. As others have said, give those children a chance.

[David Hanson (in the Chair)]

The previous Chair set a time limit on speeches of six minutes, which has been successful, in that all right hon. and hon. Members have been able to take part in the debate, but it leaves us with a maximum of one hour and 10 minutes for the Front-Bench speakers to respond. Front-Bench speakers, who have more than the normal 10 minutes, can be more flexible and take interventions should they so wish.

The other point I wish to make is that because the winding-up speeches have started early, some Members who have spoken in the debate are not present for these speeches and they should be. If you are watching on television, please return to the Chamber now. This is an important debate; you have contributed to it and you should be present for the Front-Bench responses.

--- Later in debate ---

[Seema Kennedy]

I will talk about the interim measures, but I think the more important thing that we need to grip is having a permanent solution for everybody living with cystic fibrosis.

Throughout the negotiations, which are rightly being led by NHS England, the Government have been crystal clear that Vertex must re-engage with the NICE process. I know that hon. Members have questions about that process, and I will try to address some of the points that have been raised. The hon. Member for York Central (Rachael Maskell) raised more detailed points for me to consider; if I do not address them, I will write to her with more detail, but there are some points about the NICE process that I will address later in my remarks.

[Jim Shannon]

Would it be possible for the Minister to give her Department’s and her own opinion on the buyers’ group that is seeking to buy similar drugs from Argentina for cystic fibrosis? Have the Government given that possibility any consideration?

[Seema Kennedy]

I shall turn later in my speech to that specific avenue that some sufferers have gone down.

Medical Cannabis under Prescription

Jim Shannon Excerpts

Monday 20th May 2019 Commons Chamber

[Lloyd Russell-Moyle (Brighton, Kemptown) (Lab/Co-op)]

We have heard some really rather touching and heartfelt speeches, and I suspect that I cannot justice to some of what we have heard. Although of course I condemn the current policy of criminalisation, I am incredibly sceptical about the use of cannabis in a recreational sense, but I am very much in favour of us moving towards a proper, normalised relationship with cannabis and cannabinoids in our health system.

The cruelty of what happened last year was that we dangled hope in front of lots of people’s faces—not only the children and their families who led the campaign, but many adults who suffer with long-term pain conditions and other conditions that would be helped by medical cannabis—and said that medical cannabis would be available for them. Through administrative burden—deliberately or because of a cock-up, I cannot quite tell—we have created a system in which the barriers are so high that the drugs are not being prescribed. Part of the problem is to do with the rescheduling, which has not been sufficient. The rescheduling has not normalised cannabis and cannabinoids even to the level of opiates. Extra conditions have been laid down through which clinicians have to jump; they have to know that no other drug could work.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for giving way. I am very conscious of my constituents Darren and Dannielle Gibson and their young daughter Sophia. I see that the Minister, the right hon. Member for Ruislip, Northwood and Pinner (Mr Hurd), is in his place. We are greatly indebted to him for his co-operation and help. [Interruption.] The Minister is in the House, but not in his place. Let me get it right. There were very memorable moments in the fight for Sophia’s medication, including coming to terms with the differences in policy between Northern Ireland and the mainland, jumping through the hoops in Northern Ireland, liaising with the Minister to find a way for my constituent to get what she needed in time and my constituent being rushed into intensive care. But here is the story. That young girl today is in receipt of medicinal cannabis. Her epileptic fits have been reduced to one a month. She can attend school again and do all the recreational things with her young friends at school and in the playground that she never could do before. It happens. It can be done. It changes lives.

[Lloyd Russell-Moyle]

It can be done if it is given to patients at the right time and in the right manner. Part of the reason why clinicians are possibly nervous about prescribing these drugs is that additional thresholds have been added to doing so. There is an extra nervousness, particularly with new drugs, as we require their use to be based on already pre-existing proven evidence.

Earlier, I mentioned what had happened with other life-threatening diseases, such as HIV, and what had happened at other times. We have now changed, relaxed and modified the rules around testing, but that was not done immediately. Those who remember will know that there was a vociferous campaign from people, particularly in America but also here in Britain, about the folly of this requirement for pre-existing medical knowledge. The shift was to look at harm: what is the harm done to not trial and not implement anything versus what is the harm done of any potential risks. In this case, we need to employ that kind of sense. Back then, it was not the clinicians or the Government who shifted the issue; the shift was achieved through the fantastic work of campaigners.

We are again seeing that fantastic work of campaigners. They may need the drug themselves, or one of their family may need the drug, and so they are having to push this debate. It is frustrating to some extent that we have not learned the lessons of previous eras when this issue was argued out. In fact, time and again, the issue has been won on the side of prescribing. Why this time are we coming down on the wrong side of the argument? What is it about cannabis that suddenly sets off some kind of alarm bell in the heads of Ministers or civil servants so that we create a system that is not particularly conducive to prescribing?

I am bemused by the current situation in which, for some reason, private prescriptions are acceptable—others have talked about this—and seem to be getting through if people can raise the right amount of money, but our NHS is not able to reflect that. I do not know whether that is a consequence of cuts or of an NHS that is at breaking point. It could be a consequence of commissioners not wanting to prescribe these drugs, which seems strange to me because, when I look at the figures, the cost does not seem too high. It is cheaper than prescribing some other traditional medicines. It seems to me therefore that this is not an austerity issue, which we know is a bigger problem in the NHS, but some other hidden force, which means that parents need to raise thousands and thousands of pounds to try to get private prescriptions and self-prescribe.

I would like to slightly widen the debate from children, on whom we have quite rightly focused, to some of my constituents who are adults in chronic pain. Although it is right that, through the story of a child, we can push this issue forward, the fact is that this drug could help millions who, as we have heard earlier, may already be self-prescribing with cannabis. Self-prescribing is not good for a person’s long-term health or for the state of healthcare. Doctors who are trying to provide them with holistic and rounded care cannot fully do so if people are having to go off and self-prescribe elsewhere.

United Patients Alliance is very active across the UK, but particularly in my constituency. One of my constituents, a 42-year-old man, was diagnosed with complex regional pain syndrome in October 2006. If he took conventional medication, he would be expected to take 10 ml of oral morphine a day, which is a huge amount. It means that his actual life quality is completely reduced. He is as not as cognisant as he should be or as able to interact and hold down a job. With the head of the pain clinic at St Thomas’s Hospital, he has discussed moving on to medical cannabis. They have even said that it would be a real possibility, but they believe that the hurdles are too high for them to be able to prescribe it now. He has now resorted to getting medical cannabis from other sources—to some extent involving his doctor or his clinician and creating a network of people having almost to lie and deceive the state. It is a bizarre situation. We end up making people do things in hushed conversations, rather than being able to record things properly in medical records.

This absurdity must end. We thought that it had ended. My view is that the schedulisation of drugs should not fall under the remit of the Home Office; it should be in the Department of Health and Social Care. It makes no sense for scheduling to be anywhere near the Home Office, because it should be based on medical evidence—the Home Office should, of course, decide on classification. The Department of Health and Social Care needs to make some real moves very quickly to demonstrate that this has not all been hot words and big let downs.

--- Later in debate ---

[Julie Cooper (Burnley) (Lab)]

This has been a very powerful and emotional debate that has moved Members on both sides of the House. It has also been characterised by anger and exasperation on both sides. I thank the Backbench Business Committee for selecting this subject for debate.

I pay tribute to my former, much-respected colleague, Paul Flynn, for his excellent campaigns on this subject. Somewhere, he will be cheering us on and I hope that he will have more to cheer about by the end of this debate, when we hear the Minister’s comments. I pay particular tribute to the right hon. Member for Hemel Hempstead (Sir Mike Penning) and my hon. Friend the Member for Gower (Tonia Antoniazzi); their unflinching commitment to this cause does them credit. Thanks is also due in no small part to the all-party parliamentary group, whose dedicated purpose is to

“help secure…access to natural cannabis for medical purposes in the UK under prescription from a medical professional.”

The group has worked tirelessly to that end, highlighting the barriers that exist and posing constructive suggestions to remove them.

As the hon. Member for Reigate (Crispin Blunt) rightly said, we are not concerned today with criminals and illegal drug supplies. We are not concerned with the use of recreational drugs. We are considering a most important health issue. I welcome the fact that at long last the Government accept that the therapeutic use of cannabis is a public health issue and not the business of the Home Office. I trust, therefore, that we will never again see parents in possession of medicinal cannabis products accosted and treated like criminals. I refer of course to the disgraceful treatment meted out to Teagan Appleby’s family.

Cannabis has long been known to contain active ingredients that could have therapeutic use in the treatment of many conditions, including muscular dystrophy, Parkinson’s disease, Crohn’s disease, cancer, AIDS, sickle cell disease and many more. International research and real-life experience in the UK have shown that the active ingredients CBD and THC, in combination, can provide relief for these conditions. There are also strong indications that these medicinal cannabis products can have a transformational effect in paediatric epilepsy cases. In the UK, though, we have been very slow to accept this and even slower to act to help those who could be helped.

Other powerful drugs with significant street values, such as heroin and diazepam, have long been available on the NHS under the supervision and control of qualified clinicians. Such drugs are extremely harmful in the wrong hands, but, subject to the existing controlled drugs regulations, these products can be used beneficially. In recent years, we have made some progress and have begun to accept that cannabis could and should be available in the same way. This changing attitude has most definitely been driven by increased public awareness of the suffering of individuals, many of them children.

[Jim Shannon]

Just to reiterate what the hon. Lady is saying, my young constituent Sophia has not been hospitalised with an active seizure in 10 months. I quote her mum:

“Our little lady just amazes us every day and we are very blessed to be in this position but we can’t help but think of the thousands of other children and adults that could need this right now!!!!!”

Does the hon. Lady agree that we must ensure that we are making progress? This debate is about progress and moving forward, so it is important for the Minister to do just that.

[Julie Cooper]

I am grateful to the hon. Gentleman for his intervention, and I absolutely agree. There is the potential to help thousands. We must move forward at the earliest opportunity.

Members have raised some powerful cases on behalf of their constituents—adults and children who could benefit. I want to mention the experiences of the Griffiths family. Mrs Griffiths asked me to help her nine-year-old son, Ben. Ben suffers with severe intractable epilepsy. This means that he has up to 300 seizures a day and has come close to death on more than one occasion. At the new year, Ben was admitted to Alder Hey Children’s Hospital, where, during an 18-hour period, he was observed to have 200 seizures. Ben’s parents asked whether he could have access to CBD and THC, but they were informed that Alder Hey has a blanket ban on medicinal cannabis products containing THC. Ben was discharged and his discharge letter stated that his parents had asked for an illegal drug.

In desperation, the family have turned to a private neurologist and, thanks to him, since January this year, Ben has been taking medicinal cannabis CBD and THC. His condition is much improved and yesterday he had only four seizures. His family tell me that Great Ormond Hospital and Professor Finbar O’Callaghan, the head of the British Paediatric Neurology Association, have acknowledged Ben’s improved condition, but the family are still unable to get an NHS prescription to supply the medicinal cannabis that he needs. The private prescriptions for his treatment are costing the family £2,500 a month. The family cannot continue to fund what is for Ben life-saving medication and they fear they will lose their son. Mrs Griffiths asked me: “How sick does our child have to get before the NHS will help him?” I know that question will go to the heart of everyone in the Chamber today. In relation to the high costs of private prescriptions for this medication, we are seeing the development of an unjust two-tier system where those who can pay get access to vital medication and those who cannot pay go without. That goes totally against the very principles of the NHS of which we are so proud.

In July 2018, the chief medical officer published a report declaring that there was conclusive evidence of the therapeutic benefit of cannabis medicinal products and she recommended that the whole class of cannabis medicinal products be rescheduled under the misuse of drugs regulations. The Home Secretary listened and, on 1 November 2018, the Government took action to reschedule cannabis for medical purposes. This was a very welcome step, making it legal for doctors on the specialised register to prescribe unlicensed whole-plant cannabis products for medicinal use in the UK. On that day, hundreds of families across the country celebrated, believing that this meant that they would have access via the NHS to medicinal cannabis. Sadly, that has not been the reality. Not one single NHS prescription has since been written for whole-plant medical cannabis and the hopes of many have been cruelly dashed.

Ironically, changing the legal status of medicinal cannabis has actually made the situation worse. Prior to that change in legislation, the Home Secretary had the power to grant special licences to make medicinal cannabis available. The Home Secretary no longer has that power. Now supplies are conditional on both clinical sign-off and a funding agreement, and that is not happening. I know that the Minister and the Secretary of State want to resolve the problem. I also know that the Secretary of State has met some of the affected families and has promised to help them. But the clock is ticking. The End Our Pain campaigners are absolutely clear that this is a matter of life and death. It is now two months since the Secretary of State met the families and, in that time, not one single NHS prescription has been written for medicinal cannabis that contains both CBD and, crucially, THC. There are many good intentions, but the Department’s implementation procedures following the rescheduling of medicinal cannabis are not fit for purpose.

The Secretary of State has said repeatedly that he cannot overrule the judgment of clinicians, and of course we do not expect him to do so. We do, though, expect that he recognises that these are exceptional circumstances of great urgency and urgent special action is required. It is clear that the procedures are not working and we cannot rely on a “business as usual” approach. As my hon. Friend the Member for Manchester, Withington (Jeff Smith) said, we need a bespoke solution. We need an acknowledgement that cannabis is a special case. We need a broader analysis of the evidence for the efficacy of medicinal cannabis that brings together worldwide research with the experience of patients and families in the UK who have benefited from using medicinal cannabis. While NHS England investigates the causes of the blockages in the implementation process, the NHS needs to step in to meet the costs of private prescriptions.

We need improved education and support for medical practitioners with regard to medicinal cannabis. The current guidance for prescribing medicinal cannabis needs to be changed to support and protect prescribing clinicians who prescribe, following best practice, in the best interests of their patients. We need the Department of Health and Social Care and the NHS to stress that medicinal cannabis is legal and that there is an expectation that it will be prescribed in the same way as any other unlicensed medicine when appropriate. We need a guarantee on funding. We need to know that everyone right across these islands, wherever they live and whichever CCG governs the healthcare in their community, has access to funded products where appropriate. Good intentions on their own are not good enough: we need urgent action.

--- Later in debate ---

[Seema Kennedy]

I will come on to timelines later in my remarks. NHS England is currently obtaining patient consent and scheduling the necessary interviews with clinicians, decision makers and their patients. The first interviews were held today.

I want to touch briefly on devolved matters. Health is a devolved matter, but officials across the UK have been working closely on the development of this policy. The law is exactly the same in all four countries of the UK and only funding is devolved. Members have said that clinicians might be nervous about prescription and that we need to improve training. I will talk about this later, but the training package that has been commissioned from Health Education England will be made available across the UK.

[Jim Shannon]

The Minister has heard my comments on behalf of my young constituent, Sophia Gibson, who is getting medicinal cannabis through the trust area. May I suggest that, if that is how it is done for my constituent in Northern Ireland, it could be done for people across the rest of the United Kingdom through their trust area or non-governmental organisations—wherever the responsibility lies?

National Marriage and Mental Health Awareness Weeks

Jim Shannon Excerpts

Thursday 16th May 2019 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

First, I will say a big thank you to the hon. Member for Congleton (Fiona Bruce) for having set the scene. She is always a strong supporter of marriage, and I wholeheartedly support the issues that she brings before this House, whether here in the Westminster Hall Chamber or in the main Chamber. Furthermore, without speaking for the hon. Lady, whenever I bring issues to either Chamber, she is always there to add her support. I thank her for that. She has been very much at the forefront of ensuring that National Marriage Week and the issues of family life and family values are heard about in this House whenever the occasion arises. It is a real pleasure to speak in this debate.

Marriage is a wonderful thing but, like all things of worth, it is not easy. In all honesty—I speak as someone who, on 6 June, will have been married for 32 years—I have a very long-suffering wife. The truth of the matter is that she has suffered long and hard, but she is still there, and that is one of the good things about married life. If my dad had lived another two weeks—he has been dead for four years—he and my mum would have been married for 61 years. They were a long time together, and that is not counting the time they were going together way back in the early ’50s. I have no idea how and why my wife Sandra has stuck me for so long, but I thank God every day that she has.

A strong marriage requires two people who choose to love each other even when there are times they do not particularly like each other. That is the fact of it. If Sandra was here, she would say, “Amen to that.” She would wholeheartedly know what I mean when I say that, because we have some exchanges of opinion now and again. I think it is good to have those release valves. It does not mean we have fallen out; it means we can have differences of opinion. My wife is not politically motivated at all; she only became interested in politics when she married me. The fact of the matter is that whenever I bring up issues to do with politics, truthfully she is perhaps not that interested, but she supports me well and she has an opinion on political matters. She is quick to tell me about those things.

Marriage is tough, and my heart goes out to those who are unable to make things work despite the hard work put in. The reality is that relationships break down. That is a fact, even with the best relationships. No one gets married to get divorced; people get married to spend the rest of their lives together. That is how it happens, but sometimes things happen along the way. As elected representatives—we are all here speaking in this debate as elected representatives—we are probably confronted every day in our advice centres with people who have had marital breakdowns. If they are churchgoers, I genuinely usually say, “Have you spoken to your minister?” If not, I say, “Have you had a chance to talk things through with someone in Relate to see whether it is possible to pull things together?” Sometimes that works. I am not a Relate councillor with great skills, but I try to point people in the direction where some things can be brought together. That sometimes works, but it does not always work. Sometimes when they come to me as the MP, or when they did in my past life as a Member of the Legislative Assembly, things have broken irretrievably. Those are difficult times.

I read an incredibly interesting report by the Marriage Foundation, which had some noteworthy analysis and statistical presentations. Analysis carried out on the millennium cohort study data on 10,929 mothers with 14-year-old children reveals that mental health problems are especially prevalent among children whose parents split up. We have just finished the main inquiry on education in the Northern Ireland Affairs Committee. Some of the figures on education in Northern Ireland are truly scary and worrying. We have the highest levels of anxiety and depression among children of primary school and secondary school age for the whole United Kingdom. That is very worrying. This debate is so important—the hon. Member for Congleton has referred to it—because it shows the importance of having a normal home life. I say that honestly, because having that does in some way help things.

It is incredibly difficult for a child to watch a break-up, and all too often they are in the middle. It happens so often. I thank every parent who makes the determination that, regardless of the relationship status, they will not allow their child to be a pawn or used as a weapon. A story came to my memory when I was sitting here. There was a sad, sad story last weekend in one of the papers. A mother and father were breaking up and they had two children from that relationship. The really sad thing was that neither the mother nor the father wanted custody of the children. I said to myself, “How sad is that?” Neither the mother nor the father felt that the children could be with them and they wanted the other one to have them. I do not know what the outcome of that will be. Sir David, you and I have talks about many things. You are chairing this sitting, so you are independent, but I know that you and I very much agree on the importance of married life and what it does for a relationship and the children that come out of it.

I have three sons from my relationship with Sandra. Two of them are married. The big fella, Jamie, has been married 11 years, and the second married just last year, and out of that comes the grandchildren. We could never get a wee girl—it was always wee boys—but Sandra always wanted a wee girl. She now has two wee granddaughters, Katie and Mia, and just before Christmas a third grandchild was born to my second son, who was married just last year—the product of that is a wee boy called Austin. How much do we as grandparents enjoy the grandchildren, ever mindful that at 7 o’clock at night we can give them back? That is a big, big thing. We get all the enjoyment, smiles and laughter, but when they get tantrum-y and want to go or argue, we can phone up to say, “They’re ready for going home.” That is always something to remember, but I say it because of the enjoyment they give to us as parents.

The findings show that the influence of family behaviour on teenage mental health extends far beyond parental conflict. Family breakdown is the single biggest factor for girls and equal top influence for boys, along with parental relationship happiness. Whether parents are married and happy, and stay together and remain close to their child, all make a unique contribution. I believe that parents have a strong responsibility; they need to be reminded that children watch and note their every word, action and deed. Therefore, the role of the parent is critical in setting an example for children in how the family gets on together.

The positive effect of marriage on mental health is clear and there for all to see. It is particularly interesting that the Marriage Foundation study showed that the effect of marriage extends well beyond stability and selection effects. For boys, whether their parents were married when they were born remains one of the two biggest influences on their subsequent overall mental health, even after taking into account their mother’s age, education, ethnicity and relationship happiness when the child was born, and whether the parents stay together. We cannot ignore—and nor can parents—the influence that parents have on their children.

The 2016 report by the Marriage Foundation found evidence that marriage boosts self-esteem for boys and girls. It is good that that happens. The report relied on the data of 3,822 children from the British household panel survey. It revealed that teenage boys living with continuously married parents have the highest self-esteem, while teenage girls living with continuously cohabiting parents have the lowest. The data outlines that the mother’s education has a smaller effect on self-esteem, while the child’s age and the mother’s income have no effect at all. Some of those stats are particularly illuminating because they give an idea of how what happens in the family home can affect children. Although those differences are all relatively small, they are highly significant and provide robust evidence that the wellbeing of teenagers and their future life chances are influenced by whether or not their parents are married. I am not making it up—the stats come from organisations, and they cannot be ignored.

Teens of either sex who live with continuously married parents have higher self-esteem and acceptance than those who live with continuously cohabiting parents or other family types. In outlining all this, I must be very clear: I do not believe that if a family is not united by marriage, a bad outcome is predetermined—it is not; far from it—but I am referring to the findings and how the information was collated. Data shows that children from married families show a higher level of wellbeing and mental health. That should be noted and highlighted.

The institution of marriage, to which I happily subscribe, has stood the test of time, and its benefits to society are clear. I believe that the House must acknowledge that, which is why I am so happy to support my friend, the hon. Member for Congleton, and I thank her for allowing us to highlight that wonderful institution once more. I am someone who is convinced of the benefits of marriage, and in June, my 32 years of marriage will be an example of just that.

Alexandra Hospital, Redditch

Jim Shannon Excerpts

Wednesday 15th May 2019 Commons Chamber

[Rachel Maclean (Redditch) (Con)]

I am glad to be able to raise in the Chamber the issue of services at the Alexandra Hospital in Redditch. I hear concerns time and again in public meetings, and I thank the local groups, such as Save the Alex, that are campaigning on this matter.

In short, services at the Alex are inadequate. That is not my word, but the one used by the independent Care Quality Commission. It inspected Worcestershire Acute Hospitals NHS Trust, which includes the Alex Hospital in Redditch, in June last year and again found it to be inadequate. That represents no change since the last inspection. Indeed, in 16 areas that the CQC inspects, only one was rated good, none was outstanding, and half were rated inadequate, with the remaining requiring improvement. That is not good enough.

On being elected in 2017, I inherited a situation where the trust had already approved a new clinical model for future acute services to which centralisation was key. As a result, regrettably, a number of services, including maternity and paediatric care, were removed from the Alex and relocated to Worcestershire Royal Hospital. Our maternity unit closed in November 2015, and paediatrics was “temporarily” transferred in September 2016. The new plan, which was rubber-stamped in 2017, is intended to relieve pressure on both hospitals, improve patient safety and address staff shortages, but almost two years on from the removal of services and the approval of the new plan, it is clear to me that it has not had the intended outcome. The hospital is still inadequate, and the trust remains in special measures. Some services have got worse. Patients cannot access services when they need them, waiting times are poor and promised investments are not coming to fruition quickly enough. Pressure has not been relieved. Patient safety is being called into question, and staff shortages persist at both sites.

Since my election, I have given NHS bosses and management time to demonstrate to me and my constituents that the new clinical model is beneficial. I have done my best to explain to constituents why services were transferred, and I have visited the hospital time and again—along with my fellow Worcestershire MPs, who are here tonight—to keep a close eye on developments.

We have thousands of dedicated and fantastic staff in our hospital. I have spoken to many of them, and my constituents report time and again that the care they receive is fantastic. I thank every single member of staff at the hospital for their work. However, I do not believe I can continue in good faith to defend the new clinical model. It is not delivering for the people of Redditch. I secured this debate to press my constituents’ concerns on the Minister and call for a fresh approach. All options must remain on the table.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Lady for giving way; I spoke to her beforehand and explained the situation of some of my hospitals back home. I commend her efforts to retain services at the Alexandra Hospital. The recommendations of Redditch Borough Council health commission, which came out firmly against the clinical commissioning group proposals, must be given weight. The proposals must not progress to any lessening of services in the Alexandra. My own Ulster hospital is seeing proposals to redirect stroke services to a hospital that is over an hour away in traffic, which will certainly mean that damage cannot be fixed within the window of opportunity for recovery. Does she agree that money saving cannot trump life saving in any trust area?

[Rachel Maclean]

I thank the hon. Gentleman for his intervention. It sounds as though his experiences are very similar to ours in Worcestershire. I am sure he will continue to stand up for his constituents.

I have campaigned for improvements to local health services, and I welcome the investments coming on stream as a result. Upgrades in endoscopy, a new urgent care centre at the Alex and better infrastructure have all come on stream. A frailty unit has been transferred from Worcester, and a new ward has opened to improve the flow of patients in and out of A&E. Those are all making a difference.

British Sign Language Users: Access to NHS Services

Jim Shannon Excerpts

Wednesday 15th May 2019 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to follow the hon. Member for Poplar and Limehouse (Jim Fitzpatrick), and I give special thanks to the hon. Member for Newcastle upon Tyne North (Catherine McKinnell) for her passionate contribution on behalf of those who use British Sign Language. I commend her for the steps she has taken in her constituency.

I must be honest and say that I do not know much about British Sign Language. The staff in my office are aware of it and we try to have someone available for people to communicate with in BSL, should they wish to; it is important that we as elected representatives provide that opportunity. While I do not have the ability, some of my staff have made it their business to be able to communicate with those who use BSL.

I am happy that my two granddaughters have both learned sign language—in a rudimentary way; not in totality—at school. They can sign their names, which is a small way of moving forward, among other things we can do. I will ask the Minister a question along those lines, but first let me say that I am pleased to see her in her place. She seems to be enjoying her new role, and we are pleased to see her there. The difference between my grandchildren and me highlights the need for young people to have basic skills to enable them to communicate with people who may need their help. It is important that our children have an opportunity to do that at an early stage.

Although we must take steps to address the interpreter system within the NHS, as mentioned by the hon. Members for Poplar and Limehouse and for Newcastle upon Tyne North, I sincerely believe that we also need to make BSL a staple of education, so that every child has a rudimentary understanding of sign language by the time they leave school. I know the Minister is not responsible for education—her role is big enough as it is—but will she communicate with the Department for Education and find out how that can be achieved? It is so important. Our children are often criticised for anti-social behaviour, but I believe our young people are a marvellous example of what the future can hold. Such small steps enable them to have compassion for other people. My boys were always interested in other people, and I am encouraged to know that my grandchildren are the same. If the new generation has an interest in others, that means a whole lot.

The media in Northern Ireland last year highlighted the case of a deaf lady who was going through treatment for cancer, but who did not have an allocated interpreter for any of her appointments. I was shocked by the lack of signers available to NHS trusts in Northern Ireland. An article in the Belfast Telegraph outlined the issue and quoted Ann Owens from the charity Hands that Talk—a lovely name that sums up sign language. She spoke about the lack of signers available for short-notice requests:

“It can be difficult as you can need about two to three weeks’ notice sometimes, but if it’s an emergency there can be times when someone’s not available due to the shortage, including for A&E admissions.”

That is a critical point at which to have interpreters in place. She went on:

“There’s about 25 to 28 British Sign Language interpreters in Northern Ireland and only three Irish Sign Language interpreters, which would mainly be used in the Enniskillen area.”

That illustrates the issue that we want to highlight, and it shows the dearth of interpreters. We need to address that by recruiting more people who can give up their time, and who are paid to be available at short notice. Each trust must have a list of interpreters who can be available at short notice to step into A&E situations. Other Members have referred to this, but it is important to take steps to address the matter where it is at its most critical, which is usually in A&E or on the ward.

I do not want to be critical of nurses—that is not the purpose of this debate—but we need nurses who can communicate in sign language with those who require it. Last year, I was in hospital on three occasions, and I was asked to sign a document to give consent. Truthfully, I was in so much pain that I would have signed away my land and farm; just imagine what it would have been like if I could not understand what I was being told to do, because I was deaf. How difficult would it be for a deaf patient, lying in absolute agony, to be asked to sign something that they did not understand? That shows me how frightening it is for deaf people, and how important it is to have the right people in the right place at the right time.

When foreign nationals go to A&E, interpreters are sourced and money is paid out—rightly so; I support that 100%—and yet our own British deaf people are left out in the cold because of the lack of interpreters. It is not good enough to say that we do not have the signers. We know there is a problem, so let us train staff within the NHS to do the job. The hon. Members for Newcastle upon Tyne North and for Poplar and Limehouse have referred to that, and I think others who speak will do the same. Let us put funding and courses in place to teach signing, to ensure that there is always someone on site who has at least a basic understanding of BSL. It is important to have someone with even a rudimentary knowledge of sign language to communicate. We know there is a problem, we have acknowledged our responsibility and now we must address it.

Although there are 11 million people with hearing loss in the United Kingdom, new research has revealed that a staggering 94% of Brits—I am one of them—know no more than two words of British Sign Language. That really has to change. We have to be more open and more capable of responding, especially in our Government Departments and most especially within the NHS. It is so important to address the issue in the NHS. I look forward to the plan of action to fund and recruit the necessary staff to do what is right for the deaf in our community. I look forward to the contributions of the shadow Ministers from the Scottish National party and the Labour party, but I especially look forward to the Minister’s response. We are very impressed by her so far, and there is no pressure on her.

Medical Aesthetics Industry: Regulation

Jim Shannon Excerpts

Tuesday 14th May 2019 Westminster Hall

[Alberto Costa (South Leicestershire) (Con)]

I beg to move,

That this House has considered regulation of the aesthetics industry.

It is a pleasure to serve under your chairmanship, Mr Owen. I am again grateful to lead a debate on this issue, which is becoming more pressing and may affect many of our constituents. The previous debate on this topic was successful, and I thank those who took part and contributed. I also mention my constituent, Rachael Knappier, who has been brave enough to tell her story and who initially brought this issue to my attention.

As some Members will remember, Rachael received a lip filler from an unregulated beautician, who accidently injected it into her artery, causing a trauma to her lip. In January, I raised this with the Prime Minister at Prime Minister’s questions. Since then, some progress has been made by the Government and I welcome the announcement made today, but more progress is required. Following my championing of the issue, I am glad that the Government have begun to act. The Department of Health and Social Care is today launching a campaign to encourage consumers to seek professional advice when considering having procedures such as Botox, dermal fillers and cosmetic surgery.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on securing the debate. As he rightly says, there is need for a tightening of the regulations. In the media, there are children as young as 15 with botched lip fillers and injections; we need to do more to protect those children.

Does the hon. Gentleman agree that we must ensure that only medically-trained professionals, with a duty of care provided by their professional boards, carry out these procedures, under very strict regulations?

[Alberto Costa]

The hon. Gentleman is correct. We need to ensure that we have appropriate regulation with these procedures, or similar types of procedure. He is right to raise this issue on behalf of his constituents.

--- Later in debate ---

[Jackie Doyle-Price]

The hon. Lady is right, and I am grateful for the spirit in which she makes her comments. Anyone who establishes themselves in business as a beautician wants to deliver a good service, has pride in what they do and would not want to be accused of doing anything unsafe.

My first focus of activity is those organisations that train people in these procedures, because I can see a situation in which a beautician will have paid thousands of pounds to go on a course and will then think that they are qualified, but they might not be. That is where we need to bring the focus of regulation in the first instance, so that when somebody proudly displays their certificates, consumers can have some guarantee that they are legitimate. I welcome the opportunity to air these issues with the all-party parliamentary group as we move this system of regulation forward.

Sadly, we only have 30 minutes for this debate, so I doubt whether I will be able to get through as much as I would wish, but I will do my best. I am grateful for the interest of all Members here. We will continue this discussion. It is worth saying that Botox treatments and dermal fillers are increasing and, along with laser hair removal, now represent nine out of 10 non-surgical treatments performed in the UK. This is a major area of risk.

Hon. Members have referenced the campaign that we launched today. Clearly, consumers will be the best defenders of their own interest, but we must make sure that they have access to appropriate information with which to do so; we need to do much more to inform people about the risk. Just as in my hon. Friend the Member for South Leicestershire’s example of his constituent, I am quite sure that many people who have had fillers—who have gone to have their lips done, like they do—would have no idea that there is a risk of their artery being injected with poison. We need to make sure that consumers are much more aware of that, which is why we are doing so much more in the next six weeks to try to raise public awareness.

We will focus on targeting our messages to women aged 18 to 34, on whom the majority of the treatments are undertaken. I am pleased that we are working with Bauer Media, which publishes Grazia, Closer and Heat, which I hope will be appropriate vehicles to reach that audience. We will make sure that the NHS information is kept up to date and remains a meaningful resource for consumers.

[Jim Shannon]

Would the Minister consider making it so that under-18s could not have this treatment?

[Albert Owen (in the Chair)]

Minister, you have less than two minutes.