(12 years, 1 month ago)
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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.
Jim Shannon (Strangford) (DUP)
I congratulate the hon. Lady on bringing this matter to the Floor of the House. My nephew, Peter Shannon, was born with posterior urethral valves, which meant a kidney transplant for him. Had he not had one, he would be dead. Does she agree that we need a bigger push to get people to sign on to the organ transplant donor list in the interest of those with kidney diseases, and those with PKD specifically, who are currently being kept alive by dialysis treatment? Transplants are important. If Members have not signed up, they should do so and encourage others in their constituency to do the same.
Mrs Moon
I completely endorse the hon. Gentleman’s comments. It is imperative that kidneys be available for these transplant patients. It is the most generous commitment that anyone can make.
I am particularly grateful to Sandra Buckland and her husband for allowing me to quote directly from her remarks at the kidney group meeting. She bravely shared with us her experience of PKD, and I would like to share them with the House. Sandra’s powerful remarks underscore many of the points I want to make about what needs to be put in place to tackle this condition. Sandra was particularly brave in doing so, because she had also recently lost her sister, who died from PKD. She said:
“I suffer from polycystic kidney and liver disease. I am married with two sons, both with polycystic kidney disease and the youngest with polycystic kidney and liver disease. My elder son has an eight-year-old daughter with PKD and my younger son, a four-year-old son with both polycystic kidney and liver disease. My father died at age 39 with heart failure due to side effects of PKD.”
She left the group with the following question:
“Why, when I lost my own father at 17 to this dreadful disease, are lives still being lost and progress appears to be at a standstill? If more successful research could be performed, halting the genes that allow PKD to continue, it would remove the stress, heartache and trauma for many families.”
Sandra Buckland clearly demonstrates the cost of PKD to an individual and her family. It is a long-term, devastating diagnosis. At a national level the costs to the NHS are unknown, although an estimate is possible. The PKD charity believes the annual cost is £330 million. As I said in my opening remarks, PKD is currently incurable and can be managed only with dialysis and transplants, combined with monitoring, all of which are expensive. It was only in 1994 and 1996 that the two ADPKD genes were discovered. The ARPKD gene was characterised only in 2002.
Funding for research is limited. In the US, $360 million has been invested in research over the past 15 years —$45 million in 2009 alone. The House will be shocked to learn that the total investment in research in the UK and the European Union is zero. The PKD charity recently funded a small biobank of PKD kidney cells at the UCL-Royal Free, and together with the US PKD foundation, it has funded one small laboratory study in Sheffield. This funding is all reliant on donations. It is telling that in the past 12 years there has been no improvement in the life expectancy or average age of renal replacement therapy of 55 years for someone diagnosed with ADPKD.
It cannot be acceptable for PKD to remain a neglected condition in terms of research and the development of treatments. Transplants and dialysis are costly. Developing treatments would not only improve the quality of life for patients, but reduce the cost to the NHS. The PKD charity has recently begun work with the UK renal registry to develop an analysis of PKD patients on renal replacement therapy. Would the Minister consider supporting the extension of this work to include pre-dialysis patients by asking the Renal Association to develop quality standards relating to ADPKD? Would she also support changes to governance requirements that would enable the UK renal registry to collect the data, and provide the necessary funding of £500,000 for the analysis and publication of these data?
I appreciate that £500,000 may appear a large sum, but compared with the long-term savings, it is a small investment for a huge return. Funding the registry would overcome a major barrier to understanding ADPKD, support care planning and counselling, and provide cohorts for clinical studies. The information is not available at present, so there is no foundation in place on which to build a meaningful research programme.
New drug treatments are being developed, but getting access to them is not without its challenges. One PKD patient with polycystic liver disease contacted me to describe how she self-funded her involvement in a drugs trial in Italy over three years, travelling back and forth to Italy monthly for three years at her own cost. During the trial, her symptoms improved considerably. The trial has finished and her condition is rapidly deteriorating. Her local PCT refused to fund ongoing treatment. Her long-term survival is being determined by finances.
Last December the Prime Minister announced a package of support for the life science sector, which included an early access scheme for seriously ill patients with limited treatment options to receive promising new drugs in clinical trials. This accurately describes PKD patients. Will the Minister take steps to ensure, as a matter of priority, that PKD patients are included in access to drugs in clinical trials?
Last weekend a drugs trial in the Netherlands reported positive results in altering the progression of ADPKD. The drug will now be presented to the European Medicines Agency for licensing—
Mrs Moon
The drug is not without its limitations, but it does represent progress. I ask the Minister to look at ways of supporting the trails in the UK and helping ADPKD patients to participate.
There is also a lack of clear guidance about the management of ADPKD and ARPKD patients. Guidelines should include regular MRI scans to monitor kidney volume, which is an early predictor of later kidney loss and could guide future treatment decisions. Guidelines should also address access to genetic testing, which is particularly helpful in assessing young living related donors and for atypical or early onset cases. Only two centres will conduct those tests, and in the vast majority of cases PCTs will not fund them. Will the Minister give an undertaking to support with funding, as necessary, the development of guidelines and address the gaps?
There is a need to develop access to specialist services, such as neurology and genetic counselling. One solution would be to establish specialised multi-disciplinary teams or clinics that could help patients be properly assessed, counselled and managed. Those teams or clinics would require a dedicated nephrologist with an interest in ADPKD, support from a specialist nurse and input from a clinical geneticist. Will the Minister work with the NHS to develop such a service?
I have raised many issues in a short space of time. I ask the Minister to meet me and representatives of the PKD Charity at a later date to discuss the problems they face. We cannot wait another 500 years for significant progress in this field.
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.
Glyn Davies (Montgomeryshire) (Con)
Does the Minister agree that we have a duty as parliamentarians to do everything in our power to increase the level of organ donation? Does she also agree that we should implement every recommendation of the organ donation taskforce? It is working very well, but we need to move quickly to maximise the number of organs available.
Anna Soubry
I absolutely agree with everything that my hon. Friend says. I was horrified to discover in a recent meeting that unfortunately in England we are not making the progress on organ donation that we should. It is a serious problem. We know that so many lives can be saved or seriously improved if people are good enough to indicate that they are willing, on their death, for their organs to be donated.
Let me go further and say this: of course I understand why, when somebody dies, the family struggle in their bereavement to give permission to allow the loved one’s organs to be donated. However, I urge people to do so, even in those very difficult situations. It is a most wonderful way to create a real legacy by enabling somebody literally to live on through someone else. If more people could, in those dark moments, see that, it would make a profound difference to improving, and indeed prolonging, lives.
Jim Shannon
I thank the Minister for her pertinent words about transplants. I understand that when people renew their driving licence there is a box they can tick if they want to be on a donor register for the rest of their life. It is a painless exercise that commits them for ever and provides the authority for all their bodily items to be transplanted. Given that it is so easy to tick that box, perhaps more of those who are renewing their licence should do so to say, “Yes, I want to be a donor.”
Anna Soubry
The ability to do that is a golden opportunity for people, and I wish they would take it. One of the problems, though, is that someone applying for a licence will think, “Well, I’m applying for a driving licence and I can’t deal with all that now; I’ll come back to it another day”, and unfortunately they do not return to it having got their driving licence.
I would very much welcome a serious look at how we can solve this problem by campaigning harder to ask people to tick the box, make their views known, and speak to their families. Each and every one of us should talk among our families about the things that we want on our death. I know that these are difficult subjects, but this is, as we all know, a wonderful legacy that people can leave which makes a huge difference to the quality and length of the lives that people could lead.
As provision could be improved with the introduction of evidence-based best practice guidance both at diagnosis and for the management of people with polycystic kidney disease, I will ask my officials to raise this with the appropriate agencies to see what further actions can be taken.
I pay tribute to the hon. Lady and all those who have contributed to this debate, and thank them for drawing attention to this specific and important disease area. I also congratulate those at PKD Charity on all their hard work. I look forward to meeting them and the hon. Lady to make sure that we raise the profile of polycystic kidney disease.
Question put and agreed to.