Age-related Macular Degeneration: NHS Funding

Debate between Jim Shannon and Bambos Charalambous

Tuesday 9th April 2019 Westminster Hall

[Bambos Charalambous]

My hon. Friend makes an excellent point; I will come to that matter later in my speech.

AMD is an ever increasing public health issue, presenting as one of the number of long-term conditions that can lead to an increased risk of morbidity in patients. AMD costs the economy an estimated £1.6 billion a year and hits the productivity of society. There is a strong correlation between AMD and decreased quality of life outcomes, including an increase in depression, impaired ability to do everyday tasks, feeling more socially isolated and being 1.7 times more likely to suffer falls. Twenty-one per cent. of the annual medical cost of falls, which is £56.5 million, is attributed to those with visual impairments. The loss of independence resulting from sight loss can also be incredibly debilitating because systems are not set up to deal with it.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on securing this debate, and I offer the Minister all best wishes in her new position. It is well deserved, and we look forward to working with her regularly in Westminster Hall and elsewhere.

My father suffered from AMD, although he did not know he had it until it had reached a late stage. Does the hon. Gentleman agree that early diagnosis is important for all matters of eye care that affect us, as is visiting an optician at least once if not twice a year? That is one positive thing we can do.

[Bambos Charalambous]

The hon. Gentleman makes an excellent point. Early diagnosis is so important, especially for wet AMD. The target requires people to be seen within 18 weeks of diagnosis, but that is unacceptable for people with wet AMD who should be seen within two weeks. Otherwise, their vision could suffer serious damage.

One concern is that the NHS has insufficient eye clinic capacity, due to delays and cancelled appointments that the British Ophthalmic Surveillance Unit has identified could lead to up to 22 patients a month losing their vision. The all-party group on eye health and visual impairment—I am pleased to see two members of the group here today—is supported by the Royal National Institute of Blind People, and in its inquiry, “See the Light”, published in June 2018, it identified 16 recommendations on which the Government should take action.

Three recommendations on which the APPG is still waiting to see progress include: the urgent need to increase the number of trainee ophthalmologists to keep pace with increasing demand; the need to ensure that sustainability and transformation partnerships—STPs—address current and future need; and the need to establish a national target to ensure that patients who require follow-up appointments are seen within a clinically appropriate time to prevent delayed and cancelled appointments.

According to statistics from the Industry Vision Group, last year three out of 44 STPs identified ophthalmology as a priority service, and only seven out of 44 met the 18-week referral target every month between January 2017 and January 2018. Early intervention for wet AMD is crucial to avoid blindness, and even the 18-week target that I mentioned to the hon. Member for Strangford (Jim Shannon) is not suitable for people with wet AMD, which requires treatment within two weeks. There is still a need to collect robust data on ophthalmology at clinical commissioning group level in order to assess performance and learn from best practice. Some of the issues relating to delay or the cancellation of appointments may be due to systems and processes, and not necessarily to funding.

Ophthalmology has the second highest outpatient attendance of any speciality, with 7.6 million appointments in England in 2017-18 accounting for 10% of all outpatient appointments. As we are all living longer, that figure is projected to increase by up to 40% over the next 20 years. The Government could do a number of things to help improve the situation for people with AMD and other sight-threatening conditions. First, we need a national eye health strategy—that point was raised by my hon. Friend the Member for Battersea (Marsha De Cordova). Unlike Scotland and Wales, England does not have a national eye health strategy, but one is needed to address workforce capacity issues and health inequalities, and to enable better care and improvements to the quality of life for those with AMD.

[Bambos Charalambous]

I am pleased to hear of the excellent work taking place in the hon. Gentleman’s constituency.

Contained within the strategy should be a minimum commitment to research similar to that given in the Government’s dementia 2020 challenge, which committed £60 million a year to dementia research, resulting in significant advances for those suffering with dementia. It is unclear how much funding has been set aside for ophthalmology from the £20 billion announced in the Government’s NHS long-term plan. I would be curious to hear from the Minister whether it is part of the plan or not.

There is also a need for the establishment of a national ophthalmology database to collect and analyse data for the purpose of improving outcomes, better decision making, and allocating resources. At present, there is fragmented data collection, such as that by the health quality improvement partnership, administered by the Royal College of Ophthalmologists, which covers only cataract surgery. A database that routinely collects information on AMD would greatly assist research and the planning of clinical care for those with AMD.

All STPs and integrated care schemes should be held accountable for developing and implanting integrated ophthalmology plans. Three years ago, the Department of Health commissioned a number of “Getting It Right First Time” reports into a series of areas, including ophthalmology. Unfortunately, that report is yet to be published, but hopefully when that happens it could inform the integrated ophthalmology plan, along with other sources such as the Royal College of Ophthalmologists’ “Way Forward” reports.

[Jim Shannon]

The hon. Gentleman is very gracious. As I should have said earlier, I declare an interest as the chair of the APPG for eye health and visual impairment. He is right that it is important to visit an optician to have a test for AMD, but such a visit can have other benefits. Through a person’s eyes, an optician can get an idea of what that person’s body is like, and can diagnose other things that are wrong. There are other benefits to visiting an optician for an early AMD test, in terms of everything that goes with it.

[Bambos Charalambous]

The hon. Gentleman makes an excellent point. We should all visit opticians on a regular basis, because they can detect a whole series of other eye conditions.

My second ask is for the publication of a workforce development plan for ophthalmology. That should also be a priority. There is already a shortage of eye care specialists who can diagnose and treat AMD. The number of ophthalmologists in the UK is the second lowest in Europe. The numbers are expected to reduce further, while the patient population is likely to increase significantly. The Department of Health and Social Care should commit to producing a workforce development plan that addresses the current situation and assesses future demand and provision need.

NHS RightCare should also develop guidance and a workstream for AMD, and data packs that can be shared as a resource and inform improvement in treatment for AMD. An IT platform that allows better integration of services is needed—for example, from primary care to hospital-based ophthalmology—so that a more joined-up approach can lead to better outcomes for patients with AMD.

Finally, it should be remembered that there is a link between sight loss and mental health, depression and frailty. The secondary effects of sight loss should also be considered when making both national and local policies on commissioning services.

Forced Live Organ Extraction

Debate between Jim Shannon and Bambos Charalambous

Tuesday 26th March 2019 Westminster Hall

[Jim Shannon]

The hon. Gentleman and I are often in debates together—sometimes I intervene on him, or he intervenes on me, and it is pleasing to hear his comments. He reinforced the point made by the hon. Member for Burton (Andrew Griffiths).

The investigation by David Kilgour is far from our only source of evidence. There are testimonies from prisoners, confessions from Chinese medical professionals, and impossibly short waiting list times for transplants—I could go on and on. Some of that evidence was supplied by the China tribunal, which is chaired by Sir Geoffrey Nice QC. The focus is on the allegations, and on what evidence has been submitted, investigated and documented. For example, there are discrepancies in explaining the source of the organs for the claimed number of transplants, which suggests an undisclosed source. Wider concerns link religious persecution and mass imprisonment with the threat of live organ extraction in China. That includes the Falun Gong, Christians, and the Uyghur Muslims. Case studies from the China tribunal give examples of Chinese prisoners facing torture, or undergoing forced DNA, blood and organ scanning tests. There is also the Chinese law relating to forced organ removal from executed prisoners, which led to an international response from Governments and subsequent legislation. All those things are mentioned in the inquiry by Sir Geoffrey Nice QC, and they clearly underline the issues.

[Bambos Charalambous (Enfield, Southgate) (Lab)]

Does the hon. Gentleman agree that the Falun Gong have been particularly targeted by this awful practice, and that it should stop immediately as it is an abuse of human rights?

[Jim Shannon]

I agree, and I thank the hon. Gentleman for attending this morning. I know he is attending a Select Committee later, but he contributed early to this debate, which I appreciate.

All that evidence has been reviewed by many different organisations across the world including parliamentary bodies, or Parliaments themselves, in Italy, Spain, Canada, Israel, Taiwan, Ireland, the Czech Republic and the United States, as well as non-parliamentary bodies such as the UK Conservative Party Human Rights Commission— the hon. Member for Congleton is involved with that—and the China tribunal. I am here because of my interest in human rights, and because I wish, as we all do, to stand up for people across the world who are being persecuted because of their faith, or because they have no faith.

It would be much easier politically—and it would make it easier to sleep at night—to remain sceptical in the face of the evidence and be reluctant to accept it, and to push for absolute certainty before reaching any definitive conclusions, yet despite that natural inclination, all those bodies, on examining the evidence, could not help but arrive at the view that forced organ extraction is taking place in China. Indeed, the ongoing China tribunal, which is being led by Sir Geoffrey Nice QC, went as far as saying, in an interim judgment, that

“the tribunal members, are all certain, unanimously, beyond reasonable doubt, that in China forced organ harvesting from prisoners of conscience has been practised for a substantial period of time, involving a very substantial number of victims...by state organised or approved organisations or individuals”.

The evidence must be remarkably convincing to have drawn such a strong statement from an esteemed body of impartial investigators. Indeed, it is so convincing that several countries have passed or introduced legislation to make travelling to China for organ transplants illegal.

I carry an organ donation card. We have a different system in Northern Ireland. I am glad that legislation is coming through for change here at Westminster. I totally support that and I would be pleased to know that my organs might save a life if I were to pass. That would be good. However, where else in the world other than China is it possible to get an organ almost on demand?

The UK still claims that, because the World Health Organisation has declared China’s transplant system ethical, all the evidence can be ignored. How has the WHO arrived at such a different conclusion? Has it assessed all the same evidence? If not, why? If it has, why has it not produced an explanation of why the evidence is unsatisfactory? What investigations has it carried out? Has it been to military and prison hospitals in China? Has it asked to go to them? Has it been free to examine those hospitals independently, or were its representatives taken on show tours by Chinese authorities? My principal request of the Minister today is that he formally write to the WHO and ask it to assess all the evidence and, if it deems that it is not accurate and does not reflect the situation, to produce a report to demonstrate clearly why that is so. Surely that would not be too burdensome for the WHO if it has already collected the evidence to show that there is nothing suspicious about China’s transplant system.

It is worth noting that there will be further public hearings of the China tribunal on 6 and 7 April. The tribunal has issued a public call for evidence and is open to receiving further evidence on China’s past and present transplant practices from Chinese officials, as well as from organisations such as the Transplantation Society, the Declaration of Istanbul Custodian Group and the WHO. I thank the Minister for sending FCO officials to attend the previous hearings. It shows commitment. I ask him to encourage the WHO to participate in the process. The truth is that we all sincerely, desperately hope that the allegations against the Chinese Government are false. If they are, is it not in everyone’s interest for China and the WHO quickly to demonstrate that they are false so that we can all focus on other pressing issues?

That brings to me one of my key points. The allegations have been around for years. If there is no truth to them, have not the Chinese Government had ample time to prove that they are false? They have not done so. Would it not be a simple thing for them just to open their doors and allow the world in to investigate? They have not done that. The WHO itself has said it has concerns about the transparency of China’s transplant system. What reason could there be for secrecy about the programme if it is clearly and demonstrably operating in line with international standards? Surely if the WHO has evaluated the system, it is a simple matter to point to the evidence that shows that there are no problems. Perhaps there is a perfectly genuine, straightforward reason why it is possible to get a kidney in two weeks in Beijing, as opposed to two years in the United Kingdom. Surely that in itself tells a story. Does it not raise a question in people’s minds? Perhaps not, but we should honestly ask how it is possible. It seems that China has an organ transplant system that is the envy of the entire world. What possible reason could there be for hiding it?

Moreover, should not the Chinese Government want to stop the allegations? If the UK were for years to be incorrectly accused of killing religious minority groups to provide the rest of the population with organs, and if countries the world over were passing legislation against us, we would be doing everything in our power to present the evidence showing that the allegations were false, yet for some reason China has been utterly unable or unwilling to do so.

Why should that be? One might argue that China would not want to dignify the rumours with a response because they are so ludicrous. That might be the logic. However, the Chinese Government have already admitted to taking organs from executed prisoners without their consent in the past. There is an evidential basis, and it is hardly as if the allegations are so beyond the realm of possibility that they are not worth responding to, yet the Chinese Government continue to claim that their transplant system is ethical, while maintaining its shroud of secrecy, and the UK Government continue to accept the claim at face value despite all evidence to the contrary. I refer the Minister again to the evidence available through the forum of the inquiry led by Sir Geoffrey Nice.

What we are talking about in this debate is organ harvesting—crimes against humanity, and a regime that is responsible for the greatest mass incarceration of a religious group since the Nazis in the second world war, as the hon. Member for Burton said in his intervention. I am afraid that simply to accept the Chinese Government’s flimsy narrative because it is convenient is a total and utter abdication of our responsibility to all those who have suffered at the hands of tyrannical regimes. How will history judge us? The hon. Gentleman is right: now is the time to draw the line and stop live organ transplantation, and transplantation without permission of the people whose organs are removed. We say “Never again”, but we do not, with our next breath, do something to make that brave declaration reality and ask the tough questions—although we are trying to do so in the Chamber today. We would rather bury our heads in the sand than deal with the harsh light of the truth that radiates all around us. The evidence has been gathered, presented, analysed and judged countless times by countless different institutions. It has repeatedly been found to be wholly credible and convincing. Meanwhile, the Chinese Government have offered nothing substantial by way of rebuttal, despite the fact that it would be easy to do so if they were telling the truth. The absence of comment from them reinforces what I am saying.

I ask the Minister, therefore, to act on the findings of the China tribunal and to take appropriate action, including potentially following in the footsteps of many other countries and banning organ tourism to China from the UK. Over the years I have put down a number of questions. It is wrong that people should travel from here to China for what is almost a live organ on demand to suit themselves. It is hard to take in what that means —it leaves one incredulous. It means someone can sit in London or in Newtownards and order an organ to be provided on demand. Within a month they can have the operation. We need to control that, structurally, as other countries have, not simply because it is the right thing to do, but also because it is necessary to protect UK citizens from unwittingly playing a role in the horrifying suffering of religious or belief groups in China.

If, however, the Government are not willing to do that, I ask the Minister at the very least to be a friend to the Chinese Government and ask them and the WHO to engage with the China tribunal process in their own interests. Will he ask them to present clear evidence that shows that the Chinese transplant system is ethical, and that makes all the sceptical investigators, human rights organisations and legislatures feel very silly indeed? Perhaps there is some issue I am not seeing, but I simply cannot fathom why that would be a controversial or difficult request. It seems to be logical and sensible and absolutely what we should be doing morally. If China is operating an ethical transplant system, it should be jumping for joy to have opportunities to present the proof, or at least to relay it to the Minister to present to the House. If the Chinese Government are doing nothing wrong, there is absolutely no reason why the issue should be a sensitive one, or even require private diplomacy.