G8 Summit on Dementia

Debate between Tracey Crouch and Madeleine Moon

Thursday 28th November 2013 Commons Chamber

[Tracey Crouch]

I agree entirely with the hon. Gentleman. We need greater co-operation and collaboration across the world, and if that is needed across the world, we certainly need it at home.

We should recognise that the USA is committed to spending $550 million on dementia research, which is a reflection of the importance of the condition to its society. To be frank, however, the combined investment by the USA and the UK is small fry compared with the investment in research by the pharmaceutical industry. Any collaboration needs to include the global pharma leaders to ensure that they are financing research, bringing together their world-leading scientists and helping to achieve the breakthrough in the prevention and treatment of dementia that we all want. One of the most important outcomes I would like from the G8 summit is a long-term commitment to double investment in research to provide stable and predictable funding so that we can get closer to finding a cure and improved care.

[Mrs Madeleine Moon (Bridgend) (Lab)]

Does the hon. Lady agree that part of the problem is the fact that we use the term “dementia” as if it is just one thing? There are many dementias and we must not focus just on Alzheimer’s. We must be aware of frontotemporal dementias, which affect younger people in particular, and ensure there is funding for research into that.

[Tracey Crouch]

I agree entirely. This is something that blights many conditions, including cancer. We talk about cancer investment, but there is little or no research funding for some cancers. Mesothelioma is a classic example, about which there is a debate on Monday.

It is essential that research focuses on investment in infrastructure. Training and development for researchers is also crucial if we are to see swifter progress towards treatments and cures for dementia. However, it remains hard for an academic with a good idea to spin that off to a company, especially compared with the situation in America. The Government must do more to promote the commercialisation of research as these companies become a vital part of the ecosystem. Large companies and academia can then be partnered in the innovative collaborations that the Government seek.

Research on the provision of care is equally important. Four out of five people with dementia live at home. We want to keep it that way and to ensure that they can live there safely for as long as possible. Research comes in many different forms, including the identification of what works. We know that dementia costs the UK £23 billion, but arguably that money is not being spent properly or efficiently. Prevention is key. Avoiding unnecessary hospital admissions is vital to ensuring that funding is used effectively and, more importantly, makes a huge improvement in quality of life. Researching best practice in care is essential. An economic case developed by the Alzheimer’s Society estimated that if just 5% of admissions to residential care were delayed for one year as a result of dementia-friendly communities, there would be a net saving of £55 million a year across England, Wales and Northern Ireland.

There needs to be a change in the language we use when we talk about care. If we talk about weekly art lessons that are provided to help to improve cognitive function as therapy, rather than an activity, we could hope to see a change in attitude towards research and investment in this area. Many good ideas are having a positive impact in local communities. For example, Medway council, which covers part of my constituency, is promoting telecare as a means of supporting people with dementia, and there are lots of non-clinical treatments that could be further researched, such as the benefits of pets and petting animals for people with dementia, memory rooms and memory boxes. I have even heard of amazing innovative products such as wristbands that monitor someone’s usual actions so that they will detect if they have a fall. We need to consider all those things in the whole pod of research.

We should not forget to consider support for carers. Family carers of people with dementia save the economy £7 billion a year, but evidence shows that they struggle to do that, which can lead to avoidable crises in care, hospital admissions or early entry into care homes, all of which are very costly. The Dementia Action Alliance’s “Carers Call to Action” campaign, which I support, is calling for timely and tailored support for carers, whom I am sure we all agree are an important cog in the wheel of treating and providing for those with dementia.

On best practice, it is important that international collaboration includes the beneficial sharing of successes and failures. In utilising our resources, it is important that we do not duplicate unsuccessful investments and that we champion successful and effective progress. The summit should therefore ensure that all publicly funded dementia research data and results are made available, thereby allowing common factors in national research responses to be shared.

Polycystic Kidneys

Debate between Tracey Crouch and Madeleine Moon

Tuesday 6th November 2012 Commons Chamber

[Mrs Madeleine Moon (Bridgend) (Lab)]

I would like to begin by declaring an interest. I am a joint chair of the all-party parliamentary kidney group. Earlier this year, the group heard a moving presentation from representatives of the Polycystic Kidney Disease charity, led by Tess Harris, its chief executive. I would also like to mention my constituent Judith French, who suffers from polycystic kidney disease. It is the testimony I have heard from those two ladies that brings me to the Chamber today.

We have known about polycystic kidney disease since the 1500s, but in spite of such a long history, significant breakthroughs in research have been achieved only in the past 20 years. King Bathory is regarded as one of Poland’s most successful monarchs. During his short 10-year reign, he reformed the army and judicial system, and notably saw off Ivan the Terrible in 1581. Sadly, he died early because he suffered from polycystic kidney disease. His diagnosis was confirmed only 400 years after his death, when academics analysed his case.

Since King Bathory’s reign, our ability to treat and cure a wide range of complex conditions has developed beyond what many would have thought was possible. Sadly, that progress has not been felt by those diagnosed with polycystic kidney disease, known as PKD. That is all the more surprising because it is not a rare condition. The cause is a mutation in one gene that leads it to function abnormally. The disease is characterised by the progressive enlargement of cysts in both kidneys. There are two types of PKD: autosomal dominant PKD, which affects 85% of patients, and autosomal recessive PKD. The second type is rare, affecting 1 in 20,000 live births. Tragically, newborn babies with that condition have a high mortality rate in the first month of life. Those who survive are likely to have a much reduced life expectancy. I shall focus my remarks on ADPKD.

[Tracey Crouch (Chatham and Aylesford) (Con)]

I congratulate the hon. Lady on securing this Adjournment debate. Does she agree that although the condition might not be rare, it is relatively unknown, and as a consequence of the lack of awareness, unfortunately mistakes can be made, for example in the assessment of the ability of people with PKD to work? I have had recent experience of such a case involving a constituent of mine.

[Mrs Moon]

The hon. Lady is absolutely correct. This is a little-known condition, and the horrific nature and impediments caused by the condition as it progresses are little known and little appreciated. Often, people can look quite normal but be suffering tremendously. I commend her work in trying to raise awareness.

For individuals with ADPKD, it is a truly disabling, painful and limiting condition. Kidneys become enlarged, leaving patients disfigured and appearing prematurely pregnant. The kidneys continue to function normally, but eating, sleeping and even breathing can be difficult because of the size of the kidney and the pain experienced. The liver can be affected, too, and many patients are often diagnosed with PKD and liver disease. Besides the effects on the kidneys and the liver, there is a range of other complications: heart disease, bowel problems, hernias, infections and a high risk of intracranial aneurysms.

The kidneys can weigh up to 17 lb—upwards of 10% of a person’s body weight—and in one case a patient was recorded as having kidneys weighing 48 lb. An affected liver can grow more quickly than the kidneys, effectively squashing them. PKD affects people of working age and is characterised by premature mortality. Tragically, end-stage kidney failure is common at an average age of 55—within working age, as the hon. Member for Chatham and Aylesford (Tracey Crouch) mentioned.

PKD affects an estimated 12.5 million people around the world and is the fourth most common cause of kidney failure. It is more common than sickle-cell anaemia, cystic fibrosis, autonomic dystrophy and Down’s syndrome combined. We simply do not know how many people are affected by PKD in the UK. On the one hand is the answer to my parliamentary question in July. The Department of Health said that a total of 1,100 hospital admissions in 2010-11 were identified as resulting from PKD, although I was informed that that might include repeat visits by the same individuals. On the other hand, PKD Charity’s own figures suggest that the number is far higher. On the basis of the number of people requiring a kidney transplant and dialysis as a result of PKD, it estimates that as many as 60,000 to 70,000 people could have the condition in the UK.