Polycystic Kidneys

Tracey Crouch Excerpts

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.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health (Anna Soubry)]

I congratulate the hon. Member for Bridgend (Mrs Moon) on securing the debate; I know that this is an issue she campaigns on regularly. I pay tribute not only to her work, but to the excellent work of the Polycystic Kidney Disease Charity right across the UK in raising awareness of the condition and supporting those with it. I am of course more than willing to meet her and the charity and look forward to doing so. I think it will be a very worthwhile meeting.

I will do all I can to answer the hon. Lady’s many questions and deal with her requests, and not only in my remarks this evening, because, as she knows, I will not be able to respond to everything tonight. It might well be that a letter can deal with her questions, so I will certainly take away all she has said. I hope to give her some assurance about the work that is being done. As I know she understands, I can respond only as the Minister responsible in England, because health is a devolved matter. I am confident that she will raise these matters with the Welsh Assembly.

The Welsh Assembly Government—we have made inquiries—published in April 2007 a national service framework and policy statement, “Designed to Tackle Renal Disease in Wales”. Improving the quality of care for people with renal disease, or at least at risk from it, is the cornerstone of that policy statement and of the national service framework—the NSF.

In 2008, the Welsh Assembly Government issued a further three-year strategic framework, for 2008 to 2011, setting out the key interventions required of the NHS in Wales in implementing NSF standards. In England, we have successfully introduced a number of programmes to change outcomes for people with kidney disease. For example, we have introduced into the quality outcomes frameworks—known as QOF—the identification and management of chronic kidney disease and the inclusion of chronic kidney disease in the NHS health checks programme. Having raised awareness of chronic kidney disease in primary care, we now have 2.3 million people on primary care registers in England, but we want to do still more.

The NHS health checks programme is being rolled out across England this year and next. The programme invites everyone between the ages of 45 and 74 to a vascular health check. It is estimated that up to 20,000 cases of diabetes and kidney disease will be detected earlier every year. Such early identification is key to the better management of people with these conditions and ensuring they receive optimum treatment and improved outcomes.

On the particular issues raised about polycystic kidney disease, unfortunately, as the hon. Lady mentioned, PKD is not preventable; it is a genetic disorder. I pay tribute to how she has relied on the various experiences of her constituents and others connected with her work to explain with great compassion and care how the disease affects so many people and to set out its awful nature.

I am pleased to hear that international studies are currently under way, three of which are being hosted by the National Institute for Health Research, looking at the viability of new drug therapy and disease management to give improved quality of life for those with PKD. I very much heard the hon. Lady’s comments about clinical drug trials and the gathering of data. As she said, the £50,000 cost seems large, but it may be argued that in the overall sum of things it seems like a drop in the ocean, although of course I cannot make any promises. I am sure that somebody somewhere will take that on board and we will explore the matter more when we meet.

The hon. Lady asked for increased access to radiological and ultrasound scanning, and rightly so, and I would welcome the development of guidelines about best practice in that area. I know that a quality standard for chronic kidney disease was published last year by the National Institute for Health and Clinical Excellence. That sets out what high-quality, cost-effective care looks like so that commissioners and providers can assess standards of care and target improvement efforts where they are most needed.

The NICE quality standard clearly states that patients with a genetic family history of PKD over 20 years of age should be referred to secondary specialist care. Chronic kidney disease, or CKD, is associated with reduced quality of life. Quality of life varies depending on the disease stage, medical management and the presence of co-morbidities and complications. It is crucial, therefore, that those diagnosed with PKD have access to specialist care to help them deal with this long-term condition and to support them and their families emotionally. As we have heard, it is a genetic disorder.

[Tracey Crouch]

The Minister will have heard from my intervention that a constituent of mine suffers from polycystic kidneys. He was recently assessed under the Work programme as fit for work despite suffering from that horrific condition. The decision has been reversed, as there is now proper understanding of the condition and its impact on his ability to work. However, will the Minister work with the Department for Work and Pensions in issuing guidance so that unnecessary pressure is not put on people suffering from this debilitating disease during assessments?

[Anna Soubry]

I thank my hon. Friend for that helpful intervention; as ever, she makes a good case. I will take the issue up and explore it further. If she will be good enough to put her points in a letter, that will help me in my consultations and discussions with the Department for Work and Pensions.

We estimate that up to one in 1,000 of the population has PKD globally. Based on that estimate, more than 60,000 people in the UK are at risk of developing PKD. However, we do not currently collate centrally the numbers of people with PKD in England, a point raised by the hon. Member for Bridgend. I will ask the national clinical director for kidney disease to see what further action can be taken accurately to determine national incidence in England.

If the hon. Lady is good enough to make the same representations to the Welsh Assembly and indeed the Scottish Assembly, we will have a far better picture of the situation throughout the United Kingdom. [Interruption.] I should also include Northern Ireland, of course, as the hon. Member for Strangford (Jim Shannon) is urging me to do. Looking at the care received by people with polycystic kidney disease, most patients are seen in general renal clinics, and they may receive little or no genetic counselling or specific disease management advice, or a thorough needs assessment. I am aware that in the early stages there may be no symptoms, and sometimes the cysts may not be noticed until adulthood or through family screening. However, some children present early with symptoms that can be confused with another form of PKD called, as the hon. Lady said, autosomal recessive PKD. The common symptoms will vary by individual and may include back or abdominal pain, recurrent urinary infections or blood in the urine, kidney stones, and kidney failure.

People with polycystic kidney disease can require special consideration for dialysis and transplantation due to the nature of their disease and size of the cysts. I welcome all the comments made by the hon. Member for Strangford about transplants and donors and the urgent need to make sure that more people donate their kidneys—indeed, all their organs.