Polycystic Kidneys

Anna Soubry Excerpts

Tuesday 6th November 2012 Commons Chamber

[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.