Lewy Body Dementia

Debate between Alistair Burt and Mark Durkan

Tuesday 26th April 2016 Westminster Hall

[The Minister for Community and Social Care (Alistair Burt)]

It is a pleasure to serve under your chairmanship, Sir Alan. I congratulate the hon. Member for St Helens North (Conor McGinn) on securing the debate and raising the important issue of awareness and recognition of dementia with Lewy bodies. I thank him for his kind personal remarks about my weekend activities, when I ran the London marathon. He is probably unaware that the Chair and I also have a sporting connection. Many years ago, we took part in a charity penalty shoot-out between English and Scottish MPs at Ibrox stadium in front of 50,000 people. That is not the normal size of crowd that the Chair or I play football before, but we enjoyed the occasion immensely. A sporting connection runs through us all.

I congratulate the hon. Member for St Helens North on his recent appointment as ambassador for the Lewy Body Society, and on the way in which he has raised the debate and brought the issue to the Chamber. As always, I thank colleagues in the House who show an interest. I thank the hon. Members for Strangford (Jim Shannon) and for Foyle (Mark Durkan) as well as my hon. Friend the Member for Vale of Clwyd (Dr Davies) for their attendance.

I agree with the hon. Member for St Helens North about Lewy body dementia touching many families. My wife’s uncle has recently been diagnosed, and I would like to thank her and all the other members of the family who are caring for her uncle as well as the staff at the care home and social services, who have also been involved. That brings home that dementia and its variants is something that many families can expect to experience. The debate is therefore timely and raises issues that are important to all of us.

The hon. Gentleman set out well some of the symptoms of DLB and issues relating to diagnosis. I cannot better that; I will not describe the symptoms because he did that extremely well. Diagnosis can be difficult. A GP can do some simple checks to see whether there is a chance that someone could have dementia and then refer them to a memory clinic or other specialist clinic if necessary. At the clinic, the person will be asked about symptoms and have a physical check-up and memory test, and they may also have blood tests and brain scans. The results of those checks and tests will give the doctor a good idea as to whether the symptoms are caused by dementia with Lewy bodies, another type of dementia or something else entirely. It is complex and, as the hon. Gentleman said, it is reckoned that perhaps 4% of all recorded dementia may be accounted for as DLB, but it may in fact account for 10% of all cases because it tends to be mistakenly diagnosed as another condition.

That brings up the question of research, which I will turn to before more general remarks about our approach to dementia generally because the hon. Gentleman raised that as a matter of some importance. The 2020 challenge sets out the aspiration to see research funding in dementia double by 2025 and relates to funding from all sources, including industry and charity. Through initiatives including Dementias Platform UK, the Dementia Research Institute, Join Dementia Research, the international drug discovery fund and the accelerated access review, we are creating a highly attractive environment for industry investment, including new targets for drug development. We also anticipate that greater public awareness achieved through the 2020 challenge and charity campaigns will lead to increased philanthropic donation to research charities.

On how particular funding is determined and which research projects are selected, funding panels made up of academic researchers, subject experts and patient and public advisers advise on decisions as to which projects should be funded within NIHR funding programmes, within the remit of each programme, determined by quality. On DLB specifically, as the hon. Gentleman said, the National Institute for Health Research funds the NIHR Newcastle biomedical research unit in Lewy body dementia, which is part of the NIHR dementia translational research collaboration, TRCD. However, other biomedical research units and centres that make up TRCD also do research in the area, including the NIHR Maudsley biomedical research unit. That accelerates the translation of dementia research from basic science to early-phase clinical trials, focusing on the three common late-onset dementias—Alzheimer’s, vascular and Lewy body dementia—and on fronto-temporal dementia with motor neurone disease.

Other major NIHR investments include improving the diagnosis and management of neurodegenerative dementia of Lewy body type in the NHS DIAMOND-Lewy study, which the hon. Gentleman mentioned. The chief investigator, to whom we pay tribute, is Professor John O’Brien of the University of Newcastle. Funding for that major programme of work is just over £1.9 million, which lasts from January 2014 to December 2018, and it is expected to result in an increase in the number of dementia with Lewy bodies cases diagnosed and to improve their care considerably.

We are very keen to see NIHR research programmes and to fund high quality proposals in dementia where those are within remit. In terms of future spending, there will be announcements on the Dementia Research Institute in due course about competition for membership. The content of the scientific programme will depend partly on the composition and directorship of the DRI, which is to be determined by competition, but I will ensure that the hon. Gentleman’s specific pleas in relation to DLB are passed through into the process and go to the Minister who is primarily responsible.

Let me say a little about further recognition of dementia into which this fits, because that is important. The hon. Gentleman was gracious enough to recognise that this issue continues to be of the highest priority for the Government. It is not a party matter in any way, as he made clear. In 2015, the Prime Minister set out his vision for dementia over the next five years, with his challenge on dementia 2020. The implementation plan, which was published last month, sets out the actions that partners—including those across health and care—will take to ensure that those commitments are delivered.

An accurate diagnosis of dementia is key to helping people live well with the condition. As my hon. Friend the Member for Vale of Clwyd said, more people now receive a diagnosis of dementia than ever before and it is reassuring to know that in the constituency of the hon. Member for St Helens North, 87.9% of people with dementia have received a diagnosis, which is significantly above the national average. I commend and praise the relentless efforts of those providing care and support to people with dementia. Again, he set out a moving case in relation to that.

[Mark Durkan (Foyle) (SDLP)]

In the context of the Prime Minister’s commitment in challenge on dementia 2020, which is very welcome, he has committed to roll out a national standard for tailored packages of post-diagnosis support. Will the Minister commit to ensuring that, when that standard emerges, it will be articulate enough to address DLB specifically?

[Alistair Burt]

It would be best for me to take specific requests on DLB back to the Department. I will write to hon. Members who have taken part in the debate with a response to that in due course. I hear and understand the hon. Gentleman’s point, but let me reflect and come back.

I return to those who are looking after people. The families and carers and the hundreds and thousands of health and social care staff who work tirelessly to deliver high quality, compassionate, personalised care always require and deserve a mention in any discussion of dementia and those involved.

The work we have done to improve diagnosis rates has meant that more people than ever can access the advice, care and support they need to help them, their carers and families live well with the condition. We now need to focus our efforts on reducing local variation in diagnosis rates and the care and support that people require. The diagnosis is only the start. We also need to ensure that every person diagnosed with dementia, and their carers, receive meaningful care following their diagnosis. To be clear, the needs of the person with dementia, their family and carers, should be at the heart of everything we do. We therefore want to see more consistent provision of innovative and high-quality dementia care delivered in a way that is personalised and appropriate to the specific needs of the individual. I have been fortunate enough to see at first hand some of the high- quality dementia care provided across the country and have been impressed with the culturally sensitive care and support, catering for a diverse range of dementia needs.

We also want people across England to have a greater understanding of dementia and what they can do to make a real difference to people living with the condition. I am pleased to say that there are now more than 1.5 million dementia friends in England and the Alzheimer’s Society is working to deliver an additional 3 million by 2020. I am grateful to the representative who talked to me and gave me some basic advice to help me become a dementia friend. In St Helens North there are reckoned to be over 6,500 dementia friends. Furthermore, local work such as that undertaken by the Dementia Action Alliance, the Life Story Network and National Museums Liverpool in neighbouring cities is helping support people, their families and their carers live well with dementia in their local communities.

I thank the hon. Gentleman for raising the nature of the debate and for being so specific, mentioning the work of the Lewy Body Society. I note that when he was appointed as an ambassador to it, he was quoted as wanting

“a commitment from the Department of Health to ensure that recognition for DLB is an integral part of strategies to tackle dementia.”

I assure him that we want everyone diagnosed with dementia to receive meaningful care following their diagnosis, and that very much includes those with dementia with Lewy bodies.

The fact that the hon. Gentleman has taken the trouble to raise the issue for debate, that he did so in the way in which he did and that he paid tribute to those who work in this area has done an immense amount just in this debate to raise the profile of Lewy body dementia and to secure commitment and recognition from the Department.

As a result of the debate, I will write to the hon. Gentleman with some answers to the specific questions he asked. I thank him for the way in which he did that and I hope that, through what we have said this morning, our commitment to dementia—to those suffering from it, to those who care for them and to all those involved in its research and treatment—has been made clear. This is a Parliament-wide commitment, which we all share. I am pleased to have had the chance to answer the debate.

Motion lapsed (Standing Order No. 10(6)).

Mental Health Taskforce

Debate between Alistair Burt and Mark Durkan

Tuesday 23rd February 2016 Commons Chamber

[Alistair Burt]

My hon. Friend is absolutely right. I praise the storyline editors of “Coronation Street” just as much as I do those of “EastEnders”, which has done a remarkable job in relation to perinatal mental health with Stacey’s story over the past few weeks.

The Government’s anti-stigma campaign will certainly continue. We are much informed particularly by young people, with whom we have worked on Time to Change, to which we have made a further commitment of financial support. Stigma is a terrible thing, and is partly responsible for breaking the link between physical and mental health. The taskforce recommended that the Government deliver on the objective to make sure that more people with mental health problems receive help for their physical issues, so that we can deal with the terrible difference in mortality rates between those with mental health difficulties and other people. Dealing with the stigma, so that people feel able to raise their problems, is an important part of that.

[Mark Durkan (Foyle) (SDLP)]

I thank the Minister for his statement, and I acknowledge the work of the taskforce and its report.

I encourage the Minister, along with his colleagues in the Department for Education, to take a particular interest in the mental health in schools training programme, which has been developed by practitioners to ensure that schools are better equipped to support the mental health and wellbeing of pupils. Will they help to safeguard those interests in a system that is designed to be run in a similar way to the child protection system, with which schools are familiar?

[Alistair Burt]

The hon. Gentleman has a long-standing interest in these issues. He is absolutely right: in England, a pilot project with 27 schools is being run by the Department for Education to locate and identify a single point of contact in those schools on mental health issues for young people. Depending on the results, more projects can be rolled out. Early identification and support in school are absolutely essential, and that work is under way.

There are a number of different initiatives, sometimes inspired by people who have experienced personal tragedy in their own family. They realise that the tragedy that has befallen their young person might not have happened if their friends had been more aware of their circumstances, or if the school or college had been more aware. We look at all those different initiatives to see how best practice can be spread, but the hon. Gentleman is right to raise the issue.

Off-patent Drugs Bill

Debate between Alistair Burt and Mark Durkan

Friday 6th November 2015 Commons Chamber

[Alistair Burt]

After I have dealt with the other interventions, I will deal with the actions since last year’s Bill.

[Mark Durkan (Foyle) (SDLP)]

We listened to a debate earlier in which we heard about many much-loved fictional characters. This Bill is about real people with real conditions and making real-life differences for them, and we are yet to hear a real argument against it. I remind the Minister of what he said at the conclusion of the last debate about not denying sunshine. Why is he acting as an agent of darkness on this Bill?

[Alistair Burt]

Because if the message that goes out from this debate is that there is only one way to get these drugs, and if people feel that they cannot get them because of what has been said here, that would be darkness indeed. That is not the truth. That is not the position.

Syria (EU Restrictive Measures)

Debate between Alistair Burt and Mark Durkan

Tuesday 21st May 2013 Commons Chamber

[Alistair Burt]

My hon. Friend is absolutely right. Recent conversations between my right hon. Friend the Prime Minister, President Putin, Secretary of State Kerry and the Russian Foreign Minister have indicated a degree of involvement with Russia. Talking with Russia has never been off the table. Russia has great significance through its relationship with the regime in Syria, and we believe that it should now use that relationship to bring the regime to the table.

We and key allies, including the US and France, believe that lifting the arms embargo will help us to achieve the goals that I have just described. It will strengthen the hand of opposition politicians in relation to the fighters, and the hand of the moderates in relation to the extremists. It will also show that we are committed to supporting them and have the flexibility to consider further action if the regime makes a mockery of this chance for a political solution.

I want to make this Government’s position clear: no decision on arming the Syrian opposition has been taken. Amending the embargo on opposition forces would not mean that we would automatically and immediately begin arming them, although we cannot rule that out in the future; but even without acting on it, providing an exemption from the current arms embargo for opposition forces would send a powerful and timely signal to both sides. It would say to the Assad regime that a political solution is the only option, as there will be no military victory. It would tell moderate opposition forces and politicians not to lose faith in their fight against oppression or against the extremists who are seeking to capitalise on the continued instability.

[Mark Durkan (Foyle) (SDLP)]

Is the Minister saying that the message to the regime is that if talks do not succeed, nothing will be off the table? Some people in the opposition might interpret that as giving them a stake in ensuring that talks do not succeed, because guns and other collateral would then come into the equation. That would not help the moderates. Instead, it would help those who have a mindset of, “We’re going to be top dog, and top gun.”

[Alistair Burt]

If there were a realistic assumption on either side that the balance of arms could change sufficiently to give one side an advantage over the other so that there was a point to continuing the slaughter, the hon. Gentleman’s point would be well made, but the assessment that more and more people are making, on the ground and outside, is that a military solution is not possible. As my right hon. Friend the Foreign Secretary said yesterday, there are only two scenarios here: one is long drawn-out killing and humanitarian suffering on a massive scale, with no decisive result; the other is the peace opportunity that is now before us. I entirely take the hon. Gentleman’s point, but our argument is that, because of that assessment that there can be no military victory, let us give the moderates the sense of support and protection they might need to be flexible if conditions change. The important point is to press both sides to negotiations and talks, because that must be successful.

We make no mistake: the regime is trying to change the balance of forces on the ground even as we talk, and will do so even as negotiators meet in Geneva. Lifting the embargo for the opposition will give us the flexibility to protect civilians, save lives and respond to a major escalation in the conflict, such as the use of chemical weapons. Even if the embargo were to be lifted, we are clear that lethal supplies would be considered only if they were a necessary, proportionate and lawful response to extreme humanitarian suffering and there was no practicable alternative. Any supplies would be carefully calibrated and monitored, as well as legal; they would be aimed at saving lives, alleviating the human catastrophe and supporting moderate groups. Our policy on Syria will continue to focus on bringing an end to the bloodshed.

Oral Answers to Questions

Debate between Alistair Burt and Mark Durkan

Tuesday 22nd January 2013 Commons Chamber

[Mark Durkan (Foyle) (SDLP)]

10. What assessment he has made of reported clashes between Sri Lankan security forces and Jaffna university students and the situation of those who have been arrested and detained.

[The Parliamentary Under-Secretary of State for Foreign and Commonwealth Affairs (Alistair Burt)]

We are concerned about the attacks on students at Jaffna university in November last year. Our high commissioner has expressed those concerns to the authorities in Sri Lanka, and we continue to monitor the detention of those students. We take every opportunity to raise human rights concerns with the Government of Sri Lanka, and I will raise those concerns, including this case, when I visit Sri Lanka fairly shortly.

[Mark Durkan]

I thank the Minister for his answer and his personal engagement. The attacks and arrests took place on the day after Tamil remembrance day. The region is highly militarised and even this week the Sri Lankan Parliament is looking at legislation to extend detention without warrant. When the Minister visits Sri Lanka next week, will he tell the regime there that he will not be persuaded by the language of reconciliation that it offers the diplomatic community, given that it offers only an arsenal of repression to the Tamil community?

[Alistair Burt]

The hon. Gentleman puts his case well. I expect to have straightforward private conversations with the Sri Lankan authorities. I will make the point that if reconciliation is to mean anything, a straightforward gesture such as converting the current triumphal expressions following the end of the war into a day of national reconciliation, as recommended by the lessons learned and reconciliation committee, would be a good step forward and perhaps start to defuse the tension, an increase of which would be very unwelcome.

Baha’i Community (Iran)

Debate between Alistair Burt and Mark Durkan

Wednesday 24th October 2012 Westminster Hall

[Mark Durkan (Foyle) (SDLP)]

I thank the Minister for giving way and acknowledge his diligence on this and other issues. I also commend the hon. Member for Belfast East (Naomi Long). Will the Minister indicate whether it would be possible, without posing any risk of reprisals on, or further suppression of, Baha’is, for diplomatic players from the EU to have any more active and direct engagement with the Baha’i community in the current context, at least as a way of mitigating the sense of isolation and helplessness that they must feel as a community suffering compound persecution?

[Alistair Burt]

I think we would take advice locally as to what would be the best form of engagement with the Baha’i community. We would not want to do anything that would make life more difficult. It is a closed society so getting in to see representatives locally can be difficult. Those who are able to come outside Iran and make contact with others in order to tell the truth about what is happening and engage are warmly welcomed. We can certainly ensure we do as much of that as possible.

While Iran has on occasion suggested dialogue with the international community on its human rights record, it repeatedly fails to follow that up, so we do not judge its efforts to be genuine. For example, Iran has yet to respond to the recommendations either of the UN Human Rights Committee, following its examination under the international covenant on civil and political rights, or of the UN special rapporteur in his report to the Human Rights Council of March 2012. Nor has it shown or reported any progress in implementing its universal periodic review before the UN Human Rights Council. I am afraid we have to judge them by what they do.

Our message to Iran is that we will not tire of asking difficult questions and highlighting human rights violations where we find them, until Iran takes real steps needed to address our concerns. The persecution of Baha’i and other religious minorities in Iran must stop, and the Iranian regime’s wider repression of minority or alternative views must end, too. Iran has a shameful record of detentions of human rights defenders, journalists and bloggers, and seems callously ready to use tools such as the death penalty with abandon in order to intimidate.

The quiet determination of the Baha’i to co-exist peacefully with fellow Iranians as part of a diverse and tolerant Iranian society should be embraced by Iran’s Government. We will continue to call on Iran to improve its appalling behaviour and we will not waiver in our support for the plight of the Baha’i.

Question put and agreed to.