Batten Disease

Jim Shannon Excerpts

Monday 22nd July 2019 Commons Chamber

[Seema Kennedy]

I completely agree with my hon. Friend. I have answered debates here and in Westminster Hall about the medical treatments for rare diseases. To reassure both patients and their families and Members of this place, we need to ensure that the review of NICE processes is robust and transparent.

[Jim Shannon (Strangford) (DUP)]

Less than half of all available rare disease treatments licensed by the European Medicines Agency are reimbursed in the UK for patients to access freely through the NHS, compared with 93% in Germany and 81% in France. With respect, Minister, the parents of those young children with Batten disease have seen those figures as well. They are desperate for the medication for their loved ones, so will she agree to an urgent review of the funding for such treatments for UK citizens?

[Seema Kennedy]

We are putting record amounts of funding into the NHS, but I would rest again on the independence of the NICE process and the fact that it is experts and clinicians who are making these decisions. I agree that these are dreadful decisions and it is very hard for us to make them, which is why we rely on that expert advice. I would say to the hon. Gentleman that other jurisdictions are not always a good comparison.

Children and Mental Health Services

Jim Shannon Excerpts

Tuesday 16th July 2019 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Member for Burton (Andrew Griffiths) on securing the debate.

It is a tough time for children to be children. When I was a child, which was not yesterday, I went to school, came home and did my chores, then went out to play with the rest of the children. We did not have much, but it was all we knew. That is not the case now. Children are under so much pressure to have the best gear, go to the right places and look and behave a certain way. There is no closing the door at night to get away from the pressure; social media follows them everywhere.

I was horrified, but not surprised, to read that one in 10 schoolchildren in Northern Ireland has a diagnosable mental illness, and that 35,000 children had been treated by child and adolescent mental health services in 2018. The Northern Ireland Affairs Committee has just done an inquiry on education and health that reinforced those figures. Indeed, I have had parents in my office whose child is on the waiting list for the CAMHS team and who cannot get on it, and there are many more who should be on the list and are not, so the real number must be well above 35,000.

Schools find themselves on the frontline of dealing with day-to-day anxiety and trying to help, but it is not enough. An article quotes Dr Phil Anderson, a consultant psychiatrist in CAHMS with the Belfast Health and Social Care Trust, who says:

“The research shows there has been an increase in the emotional difficulties in children, a 50% increase since 2004.”

That is an absolutely horrendous figure. He continues:

“There are various reasons given for this. One is social media and the rise of cyber bullying and screen time. Some people have said it’s as a result of rising economic inequality and, of course, academic pressures.”

We do not have the tools to deal with that, but our young people are crying out for help.

A young lady in my constituency, Katie Graden Spence, who recently shadowed me in this place, has been open about her struggle with anxiety and mental health. She published a poetry anthology, “Searching for freedom”, which paints the scene of emotion in many young people. Katie was a finalist in a prestigious category of the Pramerica Spirit of Community awards in recognition of her poetry and fundraising for Action Mental Health, as well as her work to outline her proposals on peer-led mentoring in schools to the Department for Education and the all-party parliamentary group on mental health. She is inspirational and inspired. She is fighting those battles for herself and for others her age whom we are failing. We must ask ourselves about that.

I am thankful to the hon. Member for Burton for raising the issue, but I will be more thankful to learn how we are going to radically change how we deal with children’s mental health in the UK. Children are struggling. They need us to do more. I look forward to hearing how we will put funding in the right places and guarantee controls on social media to prevent cyber bullying and trolling, to ensure that young people know that they are loved and important, and that they matter in their home, their community and here in this place.

Drug Treatment Services

Jim Shannon Excerpts

Tuesday 16th July 2019 Westminster Hall

[Jeff Smith (Manchester, Withington) (Lab)]

I beg to move,

That this House has considered drug treatment services.

It is a pleasure to see you in the Chair, Mr Hollobone. This is a very timely debate, because today we learned shocking new figures for drug-related deaths in Scotland. There were 1,187 drug-related deaths last year, which is an increase of 27% on the previous year and the highest drug death rate in the EU. We await the 2018 figures for England and Wales without much hope for better news or an improvement.

Today also sees the launch of a new report called “Towards Sustainable Drug Treatment Services” by the research-led biotech company Camurus, which has done some extremely interesting research on the state of drug treatment services, including anonymised surveys of 22 directors of public health in England. I thank Camurus for sight of that report and thank those who have sent me briefings from other organisations, including the Hepatitis C Trust, Release, the Alcohol Health Alliance UK, the Local Government Association, Humankind and the Royal College of Psychiatrists. I will not be able to refer to all those briefings in this relatively short debate, but a couple of themes emerge from most if not all of them.

First, there is worry across the sector that the whole drug treatment services system is under pressure—some would say under threat. Since around 2012, Government cuts have squeezed treatment services so much that they are under strain and struggling to cope with demand. In 2010, the coalition Government inherited one of the best drug and alcohol treatment systems in the world, with over 250,000 people treated every year. Drug-related crime was decreasing, HIV and AIDS were under control, and tens of thousands were overcoming addiction through opiate substitution or abstinence-based programmes. The Labour Government prioritised that sector in the late 1990s as part of their social exclusion agenda, and raised treatment budgets from around £200 million per year in 1998 to more than £1 billion by 2003.

When the coalition Government’s austerity really began to hit public services, the hardest-hit area was local government. When local authorities became responsible for the funding and commissioning of drugs services under the Health and Social Care Act 2012, they were already struggling with the reduction of approximately 37% in central Government funding between 2010 and 2016. Between 2014 and 2019, net expenditure on adult drug and alcohol services decreased by 19% in real terms. In 2017, the Advisory Council on the Misuse of Drugs warned that local authority funding would prioritise mandated services over non-mandated services, such as drug services,

“particularly if service users are stigmatised or seen as undeserving.”

All the stakeholders who contacted me have expressed their dismay at the impact of the cuts in recent years. More than a third of the public health directors surveyed by Camurus believe they will be unable to keep up with demand for substance misuse services in the coming year.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for giving way and for bringing this important debate to Westminster Hall. The figures for Scotland are horrendous, but the figures for the United Kingdom, including Northern Ireland, also show a rise. Does he agree that the current system is not equipped to deal with the level of drug abuse and need for treatment, and that the waiting times for dedicated facilities leave people without support for too long, which inevitably leads them back to their coping methods and further addiction? Those facilities need to be upgraded and made more available.

[Jeff Smith]

I agree with the hon. Gentleman; not for nothing is the UK labelled the drug-death capital of Europe. That should worry us across the UK.

The second theme that emerged from the reports is the real worry about the future of services after 2020 if the ring-fenced public health grant for local authorities ends and funding moves to general local authority funding. A report by the Select Committee on Health and Social Care showed that public health budgets have been cut every year since 2013, with alcohol and drug treatment services facing the biggest cuts. Councils have reduced spending on adult drug misuse by an average of 27% since 2015-16, and almost one in five local authorities have cut budgets by 50% or more since then.

The highest cuts have been disproportionately concentrated in areas with high rates of drug-related deaths, according to the Camurus report. More than half of the directors of public health surveyed believe that the removal of ring-fenced public health grants will result in further cuts. Service providers are struggling to maintain their current offer, and have even less capacity to make additional outreach efforts that are needed, such as offering proactive early prevention measures or engaging under-represented groups and communities who come less into contact with available services.

I wish I had more time to talk about hepatitis C, which is a really important issue. Stuart Smith, the head of community services at the Hepatitis C Trust, said:

“I walk into many drug services around the country and it’s chaos. They’re being asked to do so much with so little resource. I’m not sure how many of them can even feasibly have it on their priority list to discuss hepatitis C with clients.”

Hepatitis C is a very harmful condition but it can be prevented and cured if we have the resources to do so.

This is another story of austerity hitting the services that are most needed by the most vulnerable in society, but—this is the third theme that emerges from the sector responses—it is also a story of false economies. Spending on the recovery and reintegration of people who struggle with drug and alcohol dependency is one of the smartest spend-to-save investments that a Government can make. Strong evidence suggests that properly funded drug treatment services help to drive reductions in drug deaths, crime, and rates of blood- borne viruses. Research that the Government themselves commissioned concluded that drug treatment can “substantially reduce” the social costs associated with drug misuse and dependence, with an estimated cost-benefit ratio of 2.5:1. Depending on the breadth of the definition of “social costs”, that ratio could be calculated far more favourably and take into account factors such as lower crime, fewer health problems, less benefit dependency, lower social services spending and so on. Public Health England estimates that for every £1 invested in drug treatment services, there is a £4 social return.

Drug treatment and harm reduction services are cost-effective and offer good value for money, so this is a classic example of funding reductions in one part of the public services leading to spending increases in another. To quote Ron Hogg, police and crime commissioner for Durham and Darlington, who in my view is one of our most progressive PCCs:

“As PCC, I have concerns regarding the future allocation of public health funding in Durham, via the Public Health Grant, and the knock-on effect for policing. I am fearful that I will face the triple whammy of a reduction in police funding, a further reduction due to changes in the funding formula, and the consequences of a decrease in public health funding. The consequences of these changes are likely to include a significant increase in crime in County Durham and Darlington.”

We know that half of acquisitive crime in the UK is directly related to drug dependency.

NHS Dentists: Cumbria

Jim Shannon Excerpts

Wednesday 3rd July 2019 Westminster Hall

[Tim Farron (Westmorland and Lonsdale) (LD)]

I beg to move,

That this House has considered the provision of NHS dentists in Cumbria.

It is a pleasure to serve under your chairmanship, Sir David. I am grateful for the opportunity to raise an issue of enormous importance to my constituents and many others around Cumbria.

NHS dentistry in Cumbria has reached breaking point. More than half of all adults in our county have not had access to an NHS dentist in the last two years, while one in three of our children does not even have a place with an NHS dentist. In rural areas such as ours, lack of access to an NHS dentist results in families having to make ludicrously long journeys to reach the nearest surgery with an available NHS place. Often, people are not able to make, and simply cannot afford, those journeys for a simple check-up.

[Jim Shannon (Strangford) (DUP)]

The hon. Gentleman refers to his constituency, but the problems occur across the United Kingdom of Great Britain and Northern Ireland. Does he agree that the lack of dentists in rural areas is incredibly disconcerting? Perhaps we need to look at bigger incentives for those willing to open a rural practice, and incentivise those training in dental surgery, since one in five has to wait three months to have dental surgery. In other words, a rural strategy is needed.

[Tim Farron]

The hon. Gentleman makes a good point; in a moment I will come to some answers to those problems. The challenge is especially acute in rural communities when it comes to attracting and retaining dentists to work in NHS practices in places that are relatively close to people’s homes.

Acquired Brain Injury

Jim Shannon Excerpts

Tuesday 2nd July 2019 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Member for Rhondda (Chris Bryant) for having set the scene so well, and for the hard work that he does in the health sector. I have said before in this Chamber that this issue is very close to my heart, as my brother Keith had a severe motorbike accident some 16 years ago, which almost took his life and which irrevocably changed it. We were told that he would be almost like a vegetable, and although he certainly is not the same, he has a degree of independence fostered by four daily carers’ calls; my wife and sons visiting my house at the end of the lane, where he lives, daily; my 87-year-old—soon to be 88-year-old—mother taking care of him; and the local members of my Orange lodge and church groups being incredibly good to him. It is truly a collective response.

The fact is that without any of those elements of support, Keith would almost certainly be in a care home somewhere, watching TV or just looking out of a window. We are blessed to be in a community that takes care of its own, but there are so many people without that care and support who have no alternative to being in a residential facility, with no independence or semblance of who they once were. That is incredibly sad, but it does not have to be that way. I put on record my thanks to all those involved in Keith’s care from the time he had the accident, from the surgeons to the nurses and all those who helped, and for all the prayers that were made for him.

Some 350,000 people are admitted to hospital in the UK every year with ABI-related diagnoses as a result of trauma, stroke, tumour, infection, illness, carbon monoxide exposure, or hypoxia. That means that every 90 seconds, somebody with an acquired brain injury is admitted to hospital. In Northern Ireland, some of the stats are quite worrying as well: in 2014-15, there were 11,287 ABI-related hospital admissions, including 5,304 from a head injury and 4,109 from a stroke. In 2015-16, there were 11,121 admissions, 4,916 from a head injury and 4,256 from a stroke. In 2016-17, there were 10,762 admissions, 4,742 from a head injury and 4,269 from a stroke. The figures have fallen slightly, but the numbers are consistent.

We also have carbon monoxide poisonings across the UK. In England and Wales, there are about 30 deaths and 200 hospital admissions each year, as well as 4,000 visits to A&E, costing the taxpayer some £178 million per year—I know that the cost of lives to families is greater, and we should be aware of that. I support the aims of the all-party parliamentary carbon monoxide group, which has recommended that

“the Government introduce preventative measures including mandating CO alarms in all tenures, providing CO monitors in first-time pregnancies, and tackling sub-standard housing that increases the risk of CO exposure.”

Although I know that area is not directly the Minister’s responsibility, I ask her what has been done in relation to it. The APPCOG also recommends that

“Public Health England and the Foreign and Commonwealth Office do more to raise public awareness of CO in order to encourage risk-lowering behaviours at home and abroad.”

It is my belief that we could do more to prevent carbon monoxide poisonings, and those recommendations could positively affect the figures in future.

It is daunting to see someone who one minute is in their prime, and the next is completely changed. I know, because I have seen that; I have lived through it and felt it in a big way. Many people do not see a light at the end of the tunnel, so there is a need for support and respite. Many more loved ones might be able to stay with their family, rather than having to go into full-time care. There must be access to timely, specialist rehabilitation and support services, and an end to the lengthy waiting list for social service assessments for public support.

Finally, I will make a request about the benefits system. We have had to fight for everything for Keith from the very beginning. We were his court appointees; we looked after his financial affairs and everything for him, yet the benefit system does not seem to understand that. We could have had a wee bit more help with that as well, so I put that down not just for us, but for other family members.

I finish with this: as with all things, funding is key. We must rethink this strategy, and realise that it is more cost-effective in the long term to allow people to remain at home with support. More importantly, that means a better quality of life for those people, which has to be a material consideration in any Government decision.

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.

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.

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.

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[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.