Lewy Body Dementia

Alistair Burt Excerpts

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)).