Dementia

Madeleine Moon Excerpts

Thursday 10th January 2013 Commons Chamber

[Sir Tony Baldry]

That was absolutely the case. There are occasions when one is just going to be out of touch on this, but hospitals are changing. When I was young, my father was a consultant and he had three wards. He was responsible for them and each had a sister, who was identifiable and accountable, as were the staff nurses. Everyone was accountable and everyone knew what was happening. Hospitals are changing, and in some ways medical technology means that things move a lot faster: for example, hysterectomies can now be day cases. However, people are staying longer in other parts of hospitals. As my hon. Friend the Member for Chatham and Aylesford (Tracey Crouch) said, a large number of people in hospital are also suffering from dementia, and hospitals, as well as treating the acute problems of such people, need to respond to that. They need to work out where those people go once they leave the hospital. Very often someone’s dementia is not spotted until they are in hospital.

[Mrs Madeleine Moon (Bridgend) (Lab)]

My mother, too, was a nurse. Sadly, at the end of her life, she ended up in hospital far too frequently, and at the very end she also had dementia. She would say that the nurses would never have been allowed to work on the wards that she worked on, because they treat conditions, not people—that is the problem. They no longer see the person in the bed; they see only the condition. Until that focus moves back to the person and their needs, and away from the condition and the diagnosis, we will not get the change we desperately need.

[Sir Tony Baldry]

I entirely agree with the hon. Lady. Many of us took part in a Westminster Hall debate earlier this week on palliative and end-of-life care, when similar points were made. Sadly, all too often, what we read in our national newspapers demonstrates the desperateness that is occurring, as does the fact that the right hon. Member for Cynon Valley received 1,000 letters and e-mails in response to her tragic circumstances. This culture change in nursing needs to be reversed, because we must get compassion back into the NHS.

The second point I wished to discuss was carers, as I co-chair the all-party group on carers. It is estimated that 670,000 people in this country have dementia and the number is due to double in the next few years. As has rightly been said, most of us will either suffer from dementia or will know someone who will be a sufferer and so will be a carer at that time. One frustration for carers is that they do not get recognised as being carers, which is extremely frustrating, particularly when they are dealing with the GP of the person they are looking after—their loved one. I intervened on the right hon. Member for Salford and Eccles (Hazel Blears) to say that part of that frustration has arisen because GPs have been slightly in denial about people with dementia, because they are not sure what to do with them when they make the diagnosis.

However, I am pleased that the National Institute for Health and Clinical Excellence has proposed that GPs should follow three new indicators on caring for people with dementia. First, GP practices should be examined on the

“percentage of patients with dementia with the contact details of a named carer on their record.”

GPs must, therefore, diagnose someone with dementia because otherwise they will not know that they have a carer on their record. The second indicator is:

“The practice has a register of patients who are carers of a person with dementia.”

The third indicator is:

“The percentage of carers (of a person with dementia) who have had an assessment of their health and support needs in the preceding 12 months.”

There was criticism in some of the national press of the Prime Minister’s determination to ensure that people get a proper diagnosis of dementia if they are suffering from it, but unless people get such a diagnosis—unless GPs face up to the fact that their patients have dementia and start to care also about the carers of these people, by making sure that they get carers, assessments and so on—we will never get the qualitative and quantitative changes in how society is run to allow us to face up to a revolution, which has happened in the lifetime of many of us, in the number of people living in our society with dementia. This issue is going to grow.

I was very impressed by what the right hon. Member for Salford and Eccles said about Salford being a dementia-friendly community; many of us must go back to our constituencies and look at the challenge dementia poses, because, in comparison, my patch is simply in the foothills of that. Over the next few years, we will all have to try to make sure that we have dementia-friendly communities.

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[Mrs Madeleine Moon (Bridgend) (Lab)]

It is an honour to follow the contributions we have heard in this high-level debate from every right hon. and hon. Member in the Chamber. I must declare an interest from the start, as my husband suffers from dementia.

I worked some time ago for what was known as The Project. I, as the lead social worker, and a community mental health worker did joint assessments of people who had been diagnosed with dementia. That joint assessment was critical in ensuring that people got the right quality of care. I cannot emphasise enough how valuable and important those joint assessments were, because we saw the world from two totally different perspectives. We saw the person in the round. We saw totally different things and, when we came out, we never ceased to be amazed by the different clues and issues that we had picked up. It meant that the person received a different—and higher—quality of care.

The hon. Member for Banbury (Sir Tony Baldry) talked about social care workers. We were very fortunate. The Project was funded by the local authority, which was the old Mid-Glamorgan county council, and the health trust, so a lot of money was put into it. We were given our own group of social care workers—we recruited and trained our own social care workers to give them an intensive knowledge and understanding of what dementia was, of the many forms of dementia and of how it would manifest itself. We also taught them about fear: the fear of carers and families of not knowing the world they were entering into. We taught them to give people information so that they knew what the future would hold, how their condition might progress and how to look for the changes and steps they were approaching, as well as where the change was coming.

In the age of the internet, everyone can become almost an expert, but if you use the internet you can become very frightened because there is too much information and it just scares you. You need a connection to professionals who give you a feeling of being held and being walked through it at your own pace as you, as an individual carer of an individual person, go through the trauma of dementia. You also need advice about money—golly gosh, do you need that advice—about the benefits you can access and about how you are going to afford this. I have had to convert my home into a mini-hospital. A lot of my furniture has gone, and I now have a downstairs bathroom and an extension built on to the property. You need to alter your life around the person you are caring for.

Treatment is not available for everyone, but you need to know what the experts are saying about the best way forward for you as a carer and for the person suffering from the condition. Education is essential not just for the caring community but for the professionals you interact with all the time. The worst thing carers suffer from is isolation. A number of times, when I spoke to people who were faced with dementia in a professional capacity, they told me the worst thing was the isolation. They said, “If someone has cancer, people are around all the time, but you get a diagnosis of dementia in your family and people disappear.” I found that true, too—not totally, but it is certainly there.

There are provisions that society has put in place, and I shall talk about the advance power of attorney later, but communication skills seem to have disappeared. People simply do not know how to talk to people with dementia. Even when someone has quite profound dementia, there is often a way in. There is still a person in there and it is our job, as professionals, to find that person—to get in there and find some way of doing that.

I have wonderful carers who look after my husband—they are absolutely amazing. I have two people who work only for me and they look after my husband full time. They have allowed me to carry on with my job and they have allowed my husband to carry on having a life. They take him to the theatre, they take him out for lunch and they take him out for walks. They make him laugh. We communicate with him in all sorts of ways: we draw things and we write things down. His capacity for movement is now extremely limited, but he finds a way at least to say yes or no. We still insist that he makes decisions. We do not make the decisions for him; he has to make them and he must be party to them. I have stood in front of him and said, “I am not making this decision: you will tell me. Do you want this?” And he has laughed—it has to be said that he has had that in his life for a long time, but it is still there and he still finds somewhere that way of nodding, of squeezing my hand, of holding the pen and writing on the paper. We can still get that. It drives me crazy when I see nurses and professionals who will not take the time to do that.

I have been very fortunate. I have a fantastic GPs surgery, which won an award for the quality of the care that it has given to carers and to its patients. It makes a huge difference if you know that you can reach out to your local medical community and it will reach back to you.

I am very fortunate that I live in Wales because the cost of care in Wales is capped. I urge the Minister to look at what Wales has done in relation to the capping of care. It makes a difference because in addition to paying for your social care needs, you also have to pay for all the other things that you might need, such as my downstairs bathroom and the changes that I have had to make to my home to make it feasible and possible for a man who can no longer walk to access the dignity that he deserves—having the chance to be clean every day, accessing the privacy of the toilet, accessing a shower so that he feels clean and fresh and feels like a human being.

As a carer you become very reliant on the kindness of strangers. That has been true in my case. I will remain profoundly thankful for the wonderful people who have entered my life. Also, there are people out there dedicated to research, and we need their dedication and their commitment. I am very fortunate. My husband has a condition that many people do not know about; there are many dementia conditions that people do not know anything about. He has a condition called Pick’s disease. It is associated with motor neurone disease. His mother had motor neurone disease.

The research into Pick’s disease is coming out of Manchester, University College London and Cardiff university. I am fortunate in that I have close links with Professor Huw Morris, who is the lead in Cardiff university, and I know that huge strides are being made to identify the cause of Pick’s disease. A huge family of 38 members in Gwent, who have Pick’s disease throughout their family history, have made a huge difference. Families want to be engaged in research. They want to make a difference. They want to know that their experience will change the future. I urge the Minister to take time to talk to families about what they think they can contribute not just to the change in care, in treatment and in people’s attitudes, but to the change in medical research. Often families want to be part of that.

I have advance power of attorney for my husband. We were together with Dr Morris, who turned to me and asked whether I would be willing, when my husband died, for his brain to become part of the research. I said, “I’m sorry, I’m not making that decision. Steve will make that decision.” And he did. He wanted to be part of that. He wanted to contribute something. He did not want it to have been in vain. It is important that we respect the dignity and the right of the individual early on in their diagnosis to be party to simple questions like, “Are you willing, if there is an opportunity for you to give cell samples, blood tests, organs? Will you do that?” People have to be asked those questions.

People have to be asked early on, “Do you want to know what is happening?” You have to have some quite brutal and painful conversations and it is only fair. Some hon. Members have talked about GPs not wishing to make a diagnosis. It makes me laugh when I see the figure of 43% non-diagnosed dementia cases. How can we even know it is 43%? We do not even know that. Part of the reality is that GPs need to talk to carers and ask early on, “How do you two want to play this? Do you want me always to be brutally honest with you or do you want some protection from what is happening?”

We have to find a way of being more honest and more mature and not patronise people with dementia. We have to keep that person in their life, central to their life and central to their family for as long as it is possible. It is only then that we can hold our heads high as a decent society, as a caring and compassionate society, and make dementia something that we are no longer afraid of, but something that we fight.

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[Glyn Davies (Montgomeryshire) (Con)]

Like others, I pay tribute to those who secured today’s debate: the Backbench Business Committee, the right hon. Members for Sutton and Cheam (Paul Burstow) and for Salford and Eccles (Hazel Blears), and my hon. Friend Member for Chatham and Aylesford (Tracey Crouch). The debate is about a hugely important subject of which many Members will have personal experience.

Many of us are aware of the scale of the issue: dementia will affect 1.7 million people by the middle of the century, probably double the figure now. It is probably one of the biggest challenges that this Government—and future Governments—will have to face, and will be particularly important in Wales where the percentage of people aged over 65 is higher than anywhere else in the United Kingdom.

The right hon. Member for Salford and Eccles paid tribute to the commitment of the Prime Minister, who launched the dementia strategy last year, and there is a commitment to increased spending on research. That is not anywhere near enough, however, and I am certain that in future our commitment to tackling dementia will have to be greatly increased.

I want to make five or six brief points, some of which are from a Welsh perspective. As we know, the matter is devolved, but as the right hon. Member for Sutton and Cheam said, where there are differences between the parts of the United Kingdom, lessons can be learned from one Administration by another, and devolution can be a sort of test bed. Different attitudes are developing in Wales and we may be able to learn things from that.

The issue I will mention first because it is so important is early diagnosis. Levels of diagnosis in Wales are particularly low—only 37.5% of people with dementia are diagnosed, which is far lower than in other parts of the United Kingdom—and of course access to new drugs and treatments is simply not available to people who have not been diagnosed with dementia.

Many of us—probably most who will speak in this debate—have personal experience of the issue, and one thing that is common to most is that we do not realise when someone is suffering from dementia. We may think there is a degree of slowness but we do not realise what they are suffering from. The second time it happens in a family people respond much better because they know pretty much what to expect. Those suffering from dementia can be crafty because they are desperate to hide their condition; in some ways there is embarrassment about it and they do not want people to know. Without experience, dementia is difficult to identify, so early diagnosis must be an aim for anyone concerned with dealing with it.

The second issue, which was touched on earlier, is training for nurses. There is a general issue at the moment about basic care in the health service—that was touched on last Tuesday during the debate on the Liverpool care pathway, and the right hon. Member for Cynon Valley (Ann Clwyd) also mentioned it. To my mind, such training is particularly important for people in the acute health services, many of whom are elderly. Many people go into hospital because they have had a fall although they are also suffering from dementia. The level of disruption and disturbance caused when they go into hospital can completely disorientate sufferers, and the rapid onset of serious dementia is much quicker and more radical in such a situation. It is important that those working in acute health services are trained in identifying and dealing with the dementia aspect of illness, as well as with the actual condition such as a broken hip or bone.

My third point is about Parkinson’s disease. I am involved in my local Parkinson’s disease charity. I do not know whether the trauma of Parkinson’s disease brings on dementia or whether it is the other way round, but we know that people suffer from Parkinson’s disease for quite a long time before it becomes publicly apparent. Many people will go into hospital and seem to suffer from dementia without anyone realising that they are suffering from Parkinson’s. That disease may come on more quickly—the trauma may cause it—so it is vital that in hospitals and care situations patients’ conditions are regularly assessed to see whether they are suffering from Parkinson’s disease, and that they are not just dismissed as a dementia patient while another illness is completely ignored.

I touched earlier on the liaison between Governments in Wales and England but that may apply to other Administrations as well. Without making any negative political point, there is a difference in approach. The Welsh Government are much more suspicious of the private sector than the UK Government—that applies particularly to the provision of social care. The Welsh Government’s view is that social care is delivered far better by the public sector, but, generally speaking, social care is delivered by the private sector.

The relevant Committee has considered that, and there is a very good chance that there will be new, different approaches in Wales—they could be based on co-operatives or they could be community based. They might work in an urban situation, but it is important that the Government in Westminster and the Government in Wales are aware of what is happening, and that they learn about good practice and what might work.

My final point—perhaps I will be the only hon. Member to make it in the debate—is on the Welsh language. Many who are elderly and frail in Wales spoke only Welsh until they were seven, eight or nine years old—in those days, people became involved in education at that age. Today, people often go to monolingual, Welsh language schools. Up until the ages of seven or eight, that is the only language they speak, and we know that people suffering advanced dementia revert to their childhood language.

I visited an esteemed former Member of the House and House of Lords who suffers from dementia. Towards the end of his life, he was able to speak only Welsh. Previously, he had been able to speak English, but at that stage, he could speak only Welsh. I acted as an interpreter. That is important in care homes in Wales. Such people are suddenly completely isolated. Very often, they cannot speak even to their spouse.

[Mrs Moon]

I rise only to confirm exactly what the hon. Gentleman says. I worked in specialist rehabilitation in Gorseinon, which is part of Swansea where the Welsh language is much more prevalent. Families would come in, and often, I would say to them, “Speak to your family member,” which was usually a mum or a dad, “in Welsh, and tell me what you want.” It is true that going back to the language of childhood often makes communication continue for much longer than speaking the adoptive language. However, that has implications in our multicultural society across our ethnic communities, and we must bear it in mind. No matter where a person comes from or whatever their culture, we must be able to provide communication in their language of childhood.

[Glyn Davies]

I thank the hon. Lady. I was going to expand my point on the Welsh language into the impact on people who speak other languages, as so many do. People’s reversion to the language they spoke as children came as a huge shock to me. I found that the great parliamentarian I went to see was unable to communicate with his wife because she did not speak that language—it was the only one he could speak. It was a strange experience. In that home, nobody could speak Welsh, which was a tragedy. Hon. Members often discuss and debate where the Welsh language should be available, but it should be available in care homes in Wales, and particularly in ones that have a dementia wing. Having somebody who can speak Welsh is important.

A spin-off point from that is on people who have moved away from Wales—the diaspora. They could fall ill in another part of the country. Traditionally, they would come home to where they are originally from and continue to see family and friends, but they could finish up not being able to communicate with people where they live. There is a case for work between the Governments in England and Wales—the availability of the language of youth applies to other parts of the UK—on helping to repatriate people to deal with the problem. Not being able to communicate with anybody, including family, must be incredibly difficult.

Dementia is a huge issue and there are many aspects to it. I hope I have touched on one—language—and one or two others that have not been covered by other hon. Members.

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[Alison Seabeck (Plymouth, Moor View) (Lab)]

Most Members in the Chamber will have received e-mails and letters and read in the media that MPs and people at Westminster have no idea what is going on in the real world. I hope people have been listening to and watching this debate and have heard the highly emotional, very personal, incredibly thoughtful speeches that we have had in the debate today, which give the lie to those cynical comments from those outside this place. I thank the Backbench Business Committee for allowing time for the debate and the right hon. Member for Sutton and Cheam (Paul Burstow) for opening it. His expertise and interest in care in relation to dementia are well known and noted, and I thank him for taking the opportunity, along with many others, to highlight one of the more important health issues facing the country.

Unlike almost every other Member who has contributed to the debate, I have not had anyone in my close family suffer from dementia—I know people who have, but they were not immediate family members—so my speech might sound a little more clinical than others we have heard. We probably all know someone who has been touched by dementia. As we live longer, virtually every family will be affected and, as with cancer, we will have to learn to cope with an illness that a century ago people would not have lived long enough to experience. Indeed, only 30 or 40 years ago—20 years into my life—we would not have experienced family members having that awful degenerative disease.

[Mrs Moon]

Does my hon. Friend agree that we must be careful not to make it sound as if dementia happens only to the elderly? Vascular dementia and prefrontal dementia affect young people. Certainly, prefrontal dementias tend to onset when people are in their 40s and 50s. We must not let the population of this country run away with the idea that dementia happens only to old people and that it is a consequence of old age, because that is not necessarily so.

[Alison Seabeck]

My hon. Friend speaks with enormous knowledge and is absolutely right. My godmother died at the age of 56 from Alzheimer’s, as it was described then, although I suspect that it was something much more complex.

Our ageing population poses challenges, including how we discuss in a much more open and constructive way what has, in effect, been a no-go area. Cancer is a case in point. It is mentioned in hushed tones, in corners of rooms. The hon. Member for Truro and Falmouth (Sarah Newton) touched on that in her speech. Victims were often not told they had the disease. Dementia and Alzheimer’s have been treated in much the same way. As with cancer, I think that we are all learning not to be afraid of speaking about the disease. By doing so, we can better support those affected, their families and carers.

We know that the number of sufferers is going to rise. The hon. Member for Plymouth, Sutton and Devonport (Oliver Colvile)—we duplicated on this a bit—pointed out that the number is rising significantly across the UK. Indeed, it will probably rise to 1.7 million people by 2050. In Plymouth, probably around 3,000 people have dementia—I say probably because many people with dementia will not have gone to their GP and their families might not be aware of their condition. That brings us back to a point made by my hon. Friend the Member for Bridgend (Mrs Moon), because there are potentially so many people out there who are yet to be diagnosed. That is why such debates are so important in raising awareness. We cannot simply carry on sweeping the issue under the carpet. It is a little like hiding bills behind a clock on the mantelpiece: they do not actually go away; they just mount up. The same applies to dementia; caring issues mount up, and costs certainly will.

Dementia will cost the UK about £23 billion in 2013, yet dementia research is desperately underfunded, as we have heard. The Government invest about eight times less in dementia research than they do in cancer research. These are financially difficult times, but we need to ask whether we have that balance right. I welcome moves from the top of the Government to look at the priority dementia receives.

Dementia is a particular concern in the south-west. Figures show that 40,000 people across the region have been diagnosed, and Devon has one of the highest levels in the country, in part because of our demography—people want to retire there, so there is a significant number of older people. However, as my hon. Friend the Member for Bridgend has put me right, it is not just an older person’s disease.

I know from my constituency surgeries, as I am sure that others do, just how scary a diagnosis can be for patients and their families. We need to handle the diagnosis point with enormous sensitivity. My right hon. Friend the Member for Salford and Eccles (Hazel Blears) made that point extremely powerfully and clearly. Every family copes in different ways, but they all ultimately need support. Some may pretend that they do not—that they can get on, manage and cope—but that is not the case.

Carers tell me that they get stressed and worried when they are out with their loved ones. They are acutely aware that others do not understand the behaviour of the person they are with who is suffering from dementia. Shopping can be a simply dreadful experience. One carer said to me, “It would be so good to be able to go out shopping and not worry.” The hon. Member for Chatham and Aylesford (Tracey Crouch) made a good point about that. I am delighted to hear that companies such as Asda are training their staff better to recognise and support customers who are having difficulties. I hope that other companies out there have heard that and will look at the excellent work that those companies appear to be doing.

Nor can we underestimate the pressure on carers’ mental health. They often struggle on in silence. We all know the type of person: they appear on the outside to be incredibly resilient, but in fact they are not. They need their needs to be fully understood, not only by the health service but by the people around them—those who work with them and live with them.

In Plymouth we are working towards becoming not only a dementia-friendly community but a dementia-friendly city. We have some superb people leading the campaign and taking the steps to move it forward, including Ian Sherriff and Dr Helen McFarlane from Plymouth university. We have councillors and officers on Plymouth city council, as well as a welter of voluntary organisations. We also have an accredited memory service. The diagnostic rate for the identification of dementia has seen a significant improvement following the work by Dr Cartmell to map a dementia pathway, which has provided GPs with a useful educational tool to support referral, diagnosis and treatment.

As we have heard from virtually every speaker, the early diagnosis of dementia is very important, as is the way in which society reacts to and supports those with the disease. People are helped to be empowered at a much earlier stage when they are better able to take important decisions about their care pathways. They are also enabled to share those decisions with the people closest to them, who may well be caring for them. Those affected should be able to take their own decisions for as long as that is feasible and possible. It is hugely important that they are able to take an informed view about their future life and lifestyle while living with dementia, guiding clinicians in the pattern of care wanted. Early diagnosis takes a certain tension out of the system, and we cannot overstate how important that is.

As I mentioned, in Plymouth we have lots of organisations working towards our becoming a dementia-friendly city. The hon. Member for Plymouth, Sutton and Devonport talked about the naval base, HMS Drake, where people have signed up to play their part in the Plymouth Dementia Action Alliance. Human resources policies have been amended to support service families, who may also be caring for somebody with dementia. Someone on the front line on a tour of duty in Afghanistan already has an awful lot to worry about apart from worrying about a relative, or somebody they are very close to, who has dementia. It is enormously important for them to be confident that that person is in good and caring hands while they are a long way away and out of contact.

The Dartmoor rescue team has also lent its skills. One might ask why, but I am afraid we have all heard these stories and all know people who have said, “A member of my family has left home and wandered off.” We have a young councillor on Plymouth city council whose grandfather has a habit of doing that and she often tweets asking whether anybody has seen him. The Dartmoor rescue team is bringing its expertise to bear not only by helping to track and find people, but by taking people for walks in areas they may be familiar with on Dartmoor and elsewhere.

As we have heard, the private sector is also buying in and schools such as Stoke Damerel have taken an interest, because children have grandparents who may be suffering. Helping them understand what is happening to their gran or grandpa offers reassurance.

I want to see the work that is being done in Plymouth to prepare us to be a dementia-friendly city come to fruition. I put on record my thanks to all those involved in the alliance who are pressing forward with that work. Importantly, I want every city in the UK to follow the lead of, and move in the same direction as, some of the country’s early pioneers.

I recently attended the opening of Waylands in Ernesettle in my constituency. It is a residential centre for people with varying stages of dementia. It is a well-thought-through development and I would hope to see more such developments being built to such a high standard. Everything has been thought through, including memory boxes and the colour of the walls. It is a superb facility. However, there is an issue—this has been touched on by other Members—namely the recruitment of staff with the right qualifications and attitude towards nursing and supporting patients with dementia. The centre tells me that it has been quite easy to recruit care assistants with good qualifications and the right attitude, but much more difficult to get properly trained dementia nurses. What is the Minister’s Department doing, alongside the Departments for Education and for Business, Innovation and Skills, to ensure that we have enough people with the right skills to meet that undoubted need? We also need reassurance that those people are properly trained. We do not want a recurrence of what happened in Stafford.

Patients with dementia cannot whistleblow, which is a real issue. If someone does not have a family around them to identify the problems they face, how will their voice be heard? As my right hon. Friend the Member for Cynon Valley (Ann Clwyd) has said, too many people are alone in hospital who do not have people to take action to feed them. I cannot say how strongly I feel about the importance of good, compassionate nursing care to look after people with every need—and I mean every need—and ensure that they eat and live as long a life as possible, given their conditions.

We also need to take into account the fact that dementia sufferers have a range of other physical ailments. We need to learn and do better on the ways in which they are nursed and how clinical teams handle them. These people are very afraid, in strange circumstances, often alone and faced with strange equipment and various other things. I genuinely think that an awful lot more could be done to make their progress through the health-care system altogether more sensitive to their individual needs.

I look forward to hearing the responses of both Front-Bench representatives to this debate. I want a firm commitment to a long-term dementia strategy but, more importantly, we have to have a national solution for care and it has to be affordable. As other Members have said, the figures in the press this week seem to be excessively high, but I will wait to hear what the Minister has to say about that.

Polycystic Kidneys

Madeleine Moon 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.

[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—

--- Later in debate ---

Motion made, and Question proposed, That this House do now adjourn.—(Anne Milton.)

[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.

Oral Answers to Questions

Madeleine Moon Excerpts

Tuesday 21st February 2012 Commons Chamber

[The Minister of State, Department of Health (Mr Simon Burns)]

I hope that I can give some reassurance to my hon. Friend by telling him that East Midlands ambulance service is working with commissioners, hospital trusts, community health services and social care services in taking measures to address its response time performance. NHS Milton Keynes and NHS Northamptonshire have received £1.7 million in additional funding, and NHS Midlands and East advices me that some of that has been used to fund further measures to help improve EMAS response times, including through the provision of additional ambulance crews and the deployment of hospital-ambulance liaison officers in each accident and emergency department to improve handover and turnaround times.

[Mrs Madeleine Moon (Bridgend) (Lab)]

T3. The Secretary of State says he acts on advice. May I advise him to read the horrendous report from Mencap that details the death of 74 people with learning disabilities due to a lack of basic care and a lack of understanding of the health care needs of people with learning disabilities? Will he follow the advice of Mencap and ensure that the undergraduate and postgraduate training of doctors and nurses includes intensive training in the needs of people with learning disabilities, so that there will be no further unnecessary deaths of people with learning disabilities due to neglect in NHS hospitals?

Oral Answers to Questions

Madeleine Moon Excerpts

Tuesday 10th January 2012 Commons Chamber

[Anne Milton]

Of course, my hon. Friend is absolutely right that the integration of health and social care is critical, particularly for issues such as this. The changes we are making to public health and the movement of public health into local authorities will only ensure better integration, so that we can reduce those 27,000 excess deaths.

[Mrs Madeleine Moon (Bridgend) (Lab)]

7. What research his Department has undertaken on the prevention of suicide.

[The Minister of State, Department of Health (Paul Burstow)]

The Department of Health funds the national confidential inquiry into suicide and homicide by people with mental illness. The Department is funding an investigation of self-harm, and the National Institute for Health Research is funding a range of further research relevant to suicide prevention.

[Mrs Moon]

The Minister will be aware that core funding for research into the causes, effects and geographical spread of suicide and its frequent precursor, self-harm, is essential. More than 200,000 people present at accident and emergency with self-harm. I am very concerned to hear that the ongoing funding for the multi-centre study of self-harm is potentially at risk. Will he agree to meet me and the research project leads to discuss this and ensure that that research continues?

[Paul Burstow]

The hon. Lady chairs the all-party group on suicide and self-harm prevention. She does a lot of important work in this House in that regard, and I would be only too happy to talk to her about research priorities in this area. The Government are examining the research priorities to support the new strategy, which we plan to publish in the near future.

Southern Cross Care Homes

Madeleine Moon Excerpts

Tuesday 12th July 2011 Commons Chamber

[Paul Burstow]

I am grateful to my hon. Friend. That is exactly what we also need to work on, which is why we are providing in the Health and Social Care Bill the necessary powers for regulations to be made that would allow such a regulatory approach to be developed. During consideration of those ideas in Committee, it was far from clear whether the Opposition believed that this was a worthwhile approach to adopt.

[Mrs Madeleine Moon (Bridgend) (Lab)]

Before entering this House, I was a care standards inspector in Wales. Part of the problem is the fact that we are not willing to pay properly for the appropriate registration and inspection of care homes. One thing that worried me about the Minister’s statement was when he said that the registration of the new management bodies for these homes would be completed quickly. It should not be “quick” registration; it should be thorough and effective registration. May we have an assurance that the registration will indeed be thorough and effective? Secondly, may we have an assurance that the care standards inspectors will not be diverted from carrying on the ongoing inspection of other homes, and thus protecting other frail and vulnerable adults in care homes around the country?

[Paul Burstow]

I said in response to the original question that there would be no relaxation of the standards when it came to the registration of new homes, and that there would be no rush but a smooth transition to the running of the businesses by new operators. There was no suggestion that the process would take place in a rushed way. I urge the hon. Lady to read the record later.

As for the role of the CQC, we made it clear last year that we would allow it to recruit the necessary staff, and that there would be no limit to its ability to recruit staff whom it felt that it needed in order to do its job.

Suicide and Self-harm in a Recession

Madeleine Moon Excerpts

Wednesday 27th October 2010 Commons Chamber

[Mrs Madeleine Moon (Bridgend) (Lab)]

I am grateful for the opportunity to raise this important issue. In the past few months, the House has debated public spending cuts, job losses and the scaling back of services, but the human and personal costs are often forgotten among the facts, figures and policies, with a profound and tragic impact on individual lives and families.

When people take their own lives and self-harm, their reasons are complex and often individual, but running through too many incidents are worries about money and debt, the loss of status and esteem often associated with unemployment, and fears about a house or job loss. The increases in personal debt, bankruptcy, homelessness and unemployment that can follow can substantially increase the incidence of suicide and self-harm. A survey for Mind this year showed that one in 10 workers had approached their GP as a direct result of the recession, mostly for depression.

The points that I wish to make this evening are drawn from papers written by academics working in a range of institutions, including the universities of Bristol, Oxford and Manchester, which have departments focusing on suicide and its prevention. I am also indebted to the tremendous work of the Samaritans and the Royal College of Psychiatrists. The academic community draws on research on the effect of recession on cultures across Europe, as well as those in east and south-east Asia, Australia, America and elsewhere. The data go back to the great depression of the 1930s and are right up to date.

The steps that I will urge the Government to take are recommended by leading experts in the causes and prevention of suicide and self-harm. I thank those experts not only for their support and access to their research, which has helped me to prepare for the debate, but for their dedication and commitment to preventing self-harm and saving lives.

Self-harm includes intentional acts of self-poisoning or self-injury, irrespective of the motivation or the degree of suicidal intent. It includes suicide attempts as well as acts in which little or no suicidal intent is involved, such as when people harm themselves as a form of interpersonal communication of distress, to reduce internal tension or to punish themselves.

The Royal College of Psychiatrists points out in its report “Self-harm, suicide and risk: helping people who self-harm” that the incidence of self-harm has continued to rise in the UK over the past 20 years. For young people, the rate here in the UK is said to be the highest in Europe. The RCP points out that

“the needs, care, well-being and individual human dilemma of the person who harms themselves should be at the heart of what we as clinicians do. Public health policy has a vital role to play and psychiatrists must be involved and not leave these crucial political and managerial decisions to those who are not professionally equipped to appreciate the complexities of self-harm and suicide.”

It goes on to point out that

“we must never forget that we are not just dealing with social phenomena but with people who are often at, and beyond the limit of what they can emotionally endure.”

Research has shown clearly that economic cycles give a clear indication of suicidal trends, and recession has been shown to be accompanied by an increase in suicide rates across the world. Falling stock prices, increased bankruptcies, and housing insecurities including evictions, the anticipated loss of a home and higher interest rates are all associated with increased suicide risk. Study has shown that being in debt is associated with mental health problems and suicide ideation, which contribute to someone taking their life.

We know that the unemployed are two to three times more likely to die by suicide than people in employment. Unemployed men are particularly at risk. Unemployment can result in poorer mental health and contribute to anxiety, depression, low self-esteem and feelings of hopelessness, all of which increase the likelihood that someone will think that their life is no longer worth living.

For those who have no history of mental health problems, there is a 70% increase in suicide risk if they are unemployed. The great depression of the ’20s and ’30s resulted in a steep increase in male suicides. The people most at risk of suicide are those who are experiencing financial problems, those in poverty, those struggling with the rising cost of living, those who have recently lost their jobs or who are affected by a downturn in business, those who are in low-status occupations, and those with existing mental health problems. People who are self-employed or who live in single-person households, those experiencing relationship breakdowns, and those who are isolated and without strong social networks are also particularly at risk.

Initially, people often turn to drugs and alcohol to mitigate the emotional pain and confusion that they feel. Some argue that improving access to psychological therapies is the best way of helping those who suffer from mental health problems as a result of the recession. Treatments such as cognitive behavioural therapies can benefit people, but as Professor Drinkwater of the university of Bristol has made clear,

“unless you do something about the environment in which they live they are…likely to relapse. Without real jobs, decent housing, and adequate incomes people are going to be at risk of becoming ill again”.

[Andrew Stephenson (Pendle) (Con)]

I congratulate the hon. Lady on securing this important debate. In addition to what she says, I suggest that businesses have a role to play. In Nelson in my constituency, six deaths in the past six years resulted from people falling from a multi-storey car park by the Pendle Rise shopping centre. Despite that, when Pendle borough council proposed new safety measures in July last years, the car park owners refused to support such measures, saying that town hall chiefs were “wasting their money” because people with a desire to commit suicide would always “find a way”. Does she agree that such an attitude from certain businessmen is completely unacceptable?

[Mrs Moon]

Anyone who can take any step to turn someone away for that brief moment in which they might think again should do so. I agree with the hon. Gentleman that whatever barriers are needed in that car park should be in place, and I thank him for his intervention.

I would direct the Minister to research carried out by Professor David Gunnell et al on the effect of the economic crisis in east and south-east Asia in the 1990s, to recent work by Professor Keith Hawton, David Platt and Camilla Haw, and to the work of Professor Purkis and the steps taken in Australia to deal with, and indeed to reduce, suicide in a recession.

There is broad agreement in academia, psychiatry and mental health charities on what steps need to be taken to reduce suicide and the effect of a recession on suicide and self-harm rates. Suicide prevention must remain a priority of public health policy in all countries in the UK. There should be structures at national, regional and local level and mechanisms for the flow of information, evaluation and best practice in reducing suicide and self-harm. That best practice must be known, shared and implemented. It is essential that research into what works and why people are taking their own lives be funded.

The current national suicide prevention strategy for England is coming to an end. I urge the Government to ensure that this work continues to be funded and taken forward. Overseeing and administering the strategy, including issuing annual reports, costs very little, but the potential cost-effectiveness of continuing it is enormous. It is important that the strategy should help to ensure a continued focus on all those working in the field. The Samaritans and the Royal College of Psychiatrists stress the need for all people attending accident and emergency departments, as well as those admitted to hospital following incidents of self-harm or attempted suicide, to be referred to trained mental health professionals and sources of help. It is sad to say that many people—especially those who self-harm—are seen as attention-seeking, and do not get the help and support that they need. They do not get onward referrals, and instead return again and again. The risk of their self-harming becoming suicide ideation and suicide is very high. It is critical to ensure that people receive the help and support that they need, once they take that first step of approaching A and E.

Mental health needs in general, and a specific strategy to prevent suicide and self-harm in particular, should form a central part of the upcoming White Paper on public health. I would be grateful if the Minister confirmed that that will be the case. In addition to those facing unemployment and debt, or relationship problems, the needs of those at particular risk—they include asylum seekers, those in minority ethnic groups, those in institutional care, sexual minorities, veterans and those bereaved by suicide—should be actively addressed as part of the strategy.

I call on the Government to establish a UK-wide forum to bring together agencies from the four nations that are involved in suicide prevention policy, research and practice, to help us formulate a way forward through the difficult years ahead. The Departments responsible for public health in each of the four Administrations must lead a cross-departmental strategy to raise awareness of self-harm and ensure that front-line staff in education, social work, prisons, Jobcentre Plus, the police and other relevant agencies receive appropriate training in dealing with self-harm and those at risk of suicide.

Included in such a strategy should be the monitoring of harmful internet sites that encourage or incite suicide and self-harm. I would like to pay my personal thanks to my hon. Friend the Member for Garston and Halewood (Maria Eagle) for her help in taking that issue forward in the Coroners and Justice Act 2009. However, we now urgently need to address the legal status of those sites on a European level, so that we can increase our control over them and prevent them from reaching out and damaging the lives of people across the UK. It is important that Government websites, including the NHS Direct and Department of Health sites, should include authoritative, accessible and user-friendly information on the help and support available both to those who self-harm or who are contemplating taking their own lives, and to their friends and their family.

The NHS has a guide, entitled “Help is at Hand: A resource for people bereaved by suicide and other sudden, traumatic death”. That excellent guide, which could possibly be updated and reviewed, gives advice for those who are suddenly bereaved. It is an excellent example of the kind of information that should be available. Unfortunately, not enough front-line staff know about it, so the information is not getting to those who need it. Services coming into contact with those who have been bereaved by suicide should know about the document and be able to distribute it. It is vital to ensure that GPs’ surgeries, the police, social workers and coroners have access to it, and that families receive it.

Professors Gunnell, Platt and Hawton, in an article recently published in the British Medical Journal, stress the importance of social policy measures to create new jobs, of adequate welfare benefits for unemployed people, and of the provision of alternatives to early entry into the labour market, especially for young people, such as increasing the number of university places. It is important to give people a sense of hope. They also argue that employers and trade unions must be mindful of the potential risk to mental health of redundancy, and that workers should be given the help and support that they need.

I was pleased by the help and support that I received from the former Member for South Dorset to ensure that front-line Jobcentre Plus staff had access to support and training to give them an understanding of mental health needs, and of the risk to the mental health and emotional stability of those who had newly been made redundant or become unemployed. I should like to know whether that help, support and training will continue to be available to Jobcentre Plus staff.

In concluding my remarks, I want to stress that most people who lose their jobs, their homes or their businesses in a recession do not commit suicide or self-harm, but we must be aware of the increased risk in the current economic climate. This must be addressed by the Government. I am aware that new figures are coming out tomorrow, and I look forward to seeing whether the tremendous reduction in suicides in this country is continuing. I fear that perhaps it is not.

I also encourage the Government to enter discussions with the media on the reporting of suicides, to prevent the potential for social contagion. In the past few years, many of the national newspapers have become much more aware of what they are doing when they report such cases. I do not wish to criticise, but it is important, in a recession, that we do not exaggerate or even raise the link between the loss of a job and a death. I believe that the Government could take a lead in that area.

I would also ask all Ministers, when looking at policy, to bear in mind the emotional devastation and exhaustion that drives a person to suicide, and the enormous loss for friends and family, and to avoid trivialising that pain and despair as the Secretary of State for Transport, the right hon. Member for Runnymede and Weybridge (Mr Hammond) did in a recent article on train delays. I do not want to see that repeated.

It has been my aim in this debate to raise awareness, and to concentrate focus across government on the potential consequences of policy decisions if they are not mitigated by the help and support recommended by the Royal College of Psychiatrists, leading academic researchers and voluntary agencies working in this field. Finally, I invite the Minister to attend a meeting of the all-party parliamentary group on suicide and self-harm prevention, to discuss what the Government are going to do to reduce suicide and self-harm, so that we can engage and work together to reduce the incidence of such terrible loss and damage.

Contaminated Blood and Blood Products

Madeleine Moon Excerpts

Thursday 14th October 2010 Commons Chamber

[Mr Robinson]

I am pleased that the hon. Lady has joined the debate and agrees with us. Of course, haemophiliacs have also been affected. The ironic tragedy there is that the treatments given were meant to deal with the basic underlying condition of the haemophilia. I will mention the name of one victim, given that he is a constituent of mine—I am sure that many other Members will mention constituents of theirs too. Given that 4,670 initial cases were affected, and given that there are 650 constituencies, nearly every constituency must have had at least one tragic occurrence. I will therefore mention Joseph Peaty. He is a haemophiliac who went for treatment to correct his underlying condition, but because of the contaminated blood products, he acquired both HIV/AIDS and hepatitis C. He is watching this debate and looking for us to offer victims something more. There is no way we could accept the amendment.

[Mrs Madeleine Moon (Bridgend) (Lab)]

Does my hon. Friend agree that the real tragedy, especially for haemophiliacs, is that it is not just individuals who are affected, but whole families? The condition runs in the family, so two or three family members could be affected. The fact that people are living with such stress as a result of failure of successive Governments to tackle the issue is something that this House should totally condemn. We must take a decision today, and not allow the issue to slip further down the agenda.

[Mr Robinson]

I agree entirely with my hon. Friend, who makes a most poignant and correct intervention, if I may say so. We had a unique opportunity. The issue had moved right up in the public’s awareness. The sort of thing that we get in these debates is everybody saying how terrible it is, but then heaving a sigh of relief that they have not been affected, and on we go. The months and years drag by, and so the number comes down, from 4,600 to 2,700. Perhaps not many will be affected, but as my hon. Friend said, the nature of the diseases is that they spread, and the suffering will continue long after most of us have left this House.

Oral Answers to Questions

Madeleine Moon Excerpts

Tuesday 29th June 2010 Commons Chamber

[Mr Lansley]

My hon. Friend is referring to World Health Organisation targets, which have not in themselves been applied within the NHS, and it certainly would not be my intention to impose such targets. I agree with the implication of her question, which is that a woman who needs a caesarean section should have access to one. I am also well aware that when a woman does not require a caesarean section we should seek, through a process of discussion and providing information, to avoid that wherever possible. Birth should be considered a normal event, rather than being subject to excessive medicalisation.

[Mrs Madeleine Moon (Bridgend) (Lab)]

5. What his most recent assessment is of the adequacy of the level of support provided for people with low vision.

[The Minister of State, Department of Health (Mr Paul Burstow)]

It is for primary care trusts and local authority social services departments to make decisions on commissioning, having assessed the evidence and needs in their areas, and taking account of standards and best practice.

[Mrs Moon]

Is the Minister aware of the excellent scheme in Wales that allows people with low vision to refer themselves to a high street optician or consulting ophthalmologist, and thus to have almost immediate access to the aids and support that they need? More than 87% of people are seen within two weeks under that scheme, whereas some areas in England have an 18-month waiting list, so will he examine the scheme to see whether it can be introduced in England?

[Mr Burstow]

I am grateful for that question. Obviously, the devolved Administrations are responsible for health care in their own areas, so we have an opportunity to learn lessons from each other. This Government will examine the evaluation of the scheme that the Welsh Administration are undertaking to see whether it provides any lessons for our system.