Age-related Macular Degeneration: NHS Funding

Tuesday 9th April 2019 Westminster Hall

[Mr Charles Walker in the Chair]

16:00

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

I beg to move,

That this House has considered NHS funding for age-related macular degeneration.

I begin by welcoming the Minister to her place. I am very pleased that she is now a Minister and I look forward to having many more interactions with her.

Sight is a wonderful gift. Sight allows us to witness and experience the world we live in. It is not surprising that, in survey after survey, the fear of losing one’s sight comes top in comparison with other conditions. It is remarkable that we do not hear more about the leading cause of blindness in adults, which is age-related macular degeneration or AMD for short.

AMD is the breaking down of the macula, which is the sensitive and small tissue at the centre of the retina. It is responsible for processing central vision and allows us to see colour, detail and sharpness in objects. There are two types of AMD: dry and wet. Dry AMD, which affects 90% of people with the condition, is caused by thinning of the under-layer of the macula, which can lead to blurred vision. Thinning of the under-layer of the macula is caused by small white or yellow deposits called drusen. They may at first not affect vision all that much, but as they build up over time, they can lead to blind spots in someone’s central vision and can later become wet AMD.

Wet AMD is usually caused by new blood vessels growing underneath the macula that bleed and leak into the macula, which can cause blindness and distort vision in that eye. The onset of wet AMD is more rapid and can be more damaging, leading to irreversible vision loss. According to the charity Fight for Sight, AMD is the leading cause of sight loss in the UK, predominantly affecting people aged over 65. It accounts for 50% of severe sight impairment and 52% of all Certificate of Vision Impairment registrations in England and Wales.

AMD progressively damages a person’s central vision, which in some cases can leave them unable to read, drive or recognise faces, although they may retain their peripheral vision. It is estimated that 600,000 people in the United Kingdom are living with late-stage AMD. Industry data suggest that by 2026 there will be 9.7 million people in the UK affected by all stages of AMD and 800,000 of them will have late-stage disease that affects their vision. Projections suggest that by 2050 the figure for people with late-stage AMD could rise to 1.3 million unless measures are taken now to address this issue.

[Marsha De Cordova (Battersea) (Lab)]

I congratulate my hon. Friend on securing this very important debate and I, too, welcome the Minister to her place. Significant numbers of people will potentially lose their sight. My hon. Friend has cited some of the figures. By 2050, the number of people living with sight loss will be in excess of 4 million. Does my hon. Friend agree that, given the numbers, it is time that we had a UK-wide vision strategy on eye health and sight loss?

[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.

[Tom Tugendhat (Tonbridge and Malling) (Con)]

The hon. Gentleman is making a good point. In my community the Kent Association for the Blind has done a lot of work on this issue, and I was proud to visit it recently. I also congratulate my hon. Friend the Minister on her new appointment, and on her liberation in finding her voice again and being able to express her own views, albeit of course measured through those of the Government.

[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.

[Marsha De Cordova]

My hon. Friend is being very generous. On that point about the impact of sight loss and the link to mental health, does he agree that a clear strategy would enable all services to be more joined up, so that when somebody is diagnosed with losing their sight all the relevant support would fall into place because there is a clear pathway?

[Bambos Charalambous]

My hon. Friend makes an excellent point. The impact of sight loss can lead to depression and other mental health issues, so they should form part of any strategy related to sight loss. I agree with her 100%.

I ask the Minister to recognise the need for more attention to the needs of people with AMD, and to set about taking on board and implementing the suggestions that I have raised.

16:14

[The Parliamentary Under-Secretary of State for Health and Social Care (Seema Kennedy)]

It is a particular pleasure to serve under your chairmanship, Mr Walker, as I respond to my first debate as the new Public Health and Primary Care Minister. I thank all hon. Members for their good wishes and reassure my officials that, although I have found my voice again, I will try not to alarm them too much.

I thank the hon. Member for Enfield, Southgate (Bambos Charalambous) for bringing this important matter forward for debate. Age-related macular degeneration—AMD—is a devastating disease that seriously affects the lives of many people, particularly older people. It is the leading cause of sight loss in the UK and affects over 600,000 people. As the hon. Gentleman outlined, the two main types are dry, or early, degeneration, and wet, or late, degeneration.

Around 75% of people with AMD suffer from dry generation. For most of them, it causes milder sight loss or even near-normal vision. Although there is currently no effective treatment for that form of AMD, its impact can be reduced with vision aids. A minority of those with dry degeneration, however, will progress to wet degeneration, which can be far more serious and threaten their vision. A number of treatments for it are available, including regular eye injections or a light treatment called photodynamic therapy.

The National Institute for Health and Care Excellence has recommended a class of drugs, anti-VEGF therapies, as the clinically appropriate and cost-effective treatments for wet AMD. Currently, there are two licensed options: Lucentis and Eylea. As such, NHS commissioners are legally required to fund those treatments for patients where necessary to comply with NICE’s recommendations. NICE is currently considering whether to examine a further drug, brolucizumab, for treating AMD and recently consulted stakeholders on the suitability of referral to its technology appraisal work programme, and a decision will be taken shortly.

There is some dispute about whether nutritional therapy and a healthy diet high in antioxidants, or the prescription of supplements, can assist with the management of AMD. NHS England has advised me, however, that it has informed CCGs not to prescribe lutein or antioxidants to patients with AMD, as evidence suggests that those treatments have low clinical effectiveness.

Although we have some effective treatments for AMD, we do not rest on our laurels. Medicines continue to evolve, and we continue to look for better treatments to improve outcomes for people living with AMD. The Department provides significant funding for medical research, mainly through the National Institute for Health Research. NIHR welcomes funding applications for research into any aspect of human health, including AMD. It is important to set out some of the ways in which NIHR engaged in advancing learning in that area and is funding research.

In 2017-18, the total spend by NIHR for eye-related research was just over £20 million. That covered a wide range of studies and trials, including research relating to AMD. In that year, the NIHR clinical research network supported 38 clinical studies and trials related to the treatment and care of people with AMD and other retina-related conditions. Since 2014, NIHR has provided £9.6 million for seven research grants and awards related to AMD, including five health technology assessment studies.

I pay tribute to the excellent work of the NIHR Moorfield Biomedical Research Centre, which is a partnership between Moorfields Eye Hospital, with its unique clinical resources that support over half a million patient visits per year, and the University College London Institute of Ophthalmology, which is one of the largest and most productive eye research institutions. The partnership was awarded £19 million over five years from April 2017. It is now conducting a wide range of ground-breaking biomedical research on AMD through several of its research themes, which will ultimately translate into significant improvements in the treatment, diagnosis and management of people with eye diseases.

Prevention is an absolute priority, both for me as the new Minister for Public Health and Primary Care, and for the Secretary of State, as we prepare to publish our prevention Green Paper later this year. At the heart of the NHS long-term plan that was published earlier this year is the idea that prevention is better than cure. AMD is one of the top four causes of sight loss, alongside glaucoma, diabetic retinopathies and cataracts. All of those conditions are most prevalent in older people and we know that, once lost, vision is especially hard to restore. The Royal National Institute of Blind People suggests that 50% of cases of blindness and serious sight loss could be prevented if they were detected and treated earlier. Research shows that almost 2 million people in the UK are living with sight loss, which is vision less than six out of 12. As the hon. Member for Enfield, Southgate and the hon. Member for Battersea (Marsha De Cordova) mentioned, by 2020 that number is predicted to increase by 22% and to double to 4 million people by 2050. Those increases are due mainly to an ageing population. Eye health will be particularly relevant to these matters, given that more than 80% of sight loss occurs in people aged over 60.

I pay tribute to Galloway’s, a charity in my constituency that does amazing work with people on sight loss. My hon. Friend the Member for Tonbridge and Malling (Tom Tugendhat), who is no longer in his place, also mentioned the Kent Association for the Blind in this capacity.

[Marsha De Cordova]

I thank the Minister for giving way. She is picking up on some really important points. She talks about prevention, but there is a national need for a vision strategy. We cannot have prevention in isolation, nor living with sight loss in isolation. Everything needs to be joined up. Does the Minister agree that it is now time for a vision strategy to be part of the long-term NHS plan?

[Seema Kennedy]

I will respond to the question that the hon. Lady raised in her intervention later on in my remarks. We know that regular sight testing can lead to early detection of these conditions. In his capacity as chair of the all-party group, the hon. Member for Strangford (Jim Shannon) referred to the importance of regular eye tests, given that, combined with early treatment, they can prevent people from losing their sight. That is why we continue to fund free sight tests for people over 60 and, alongside NHS England, are fully supporting the aims of the UK Vision Strategy to improve the eye health of people in the UK. A mark of the priority that the Department places on eye health is the inclusion in the Public Health Outcomes Framework of an indicator of the rate of avoidable blindness, both as a headline measure and by main cause, to highlight and track the direction of travel at national and local level.

The hon. Member for Enfield, Southgate has raised a number of wider important issues for the eye care sector. Many of those were highlighted in the report from the all-party parliamentary group on eye health, “See the Light”, which was published last summer. The Department welcomes this report and, along with NHS England, is carefully considering the key recommendations.

The hon. Gentleman said that eye clinic capacity was insufficient. I of course share any concerns about delays to treatment. National guidance is clear that all follow-up appointments should take place when clinically appropriate, and patients should not experience undue delay at any stage of their referral, diagnosis or treatment. To help address that issue, two key initiatives—“Getting it Right First Time”, led by NHS Improvement, and the elective care transformation programme, led by NHS England—have been set up to consider what can be done to ensure that patients do not suffer unnecessary delays in follow-up care. My Department is following that work closely.

The hon. Gentleman also asks that we establish a national target to ensure that patients requiring follow-up appointments are seen within a clinically appropriate time. As I am sure he will appreciate, the intervals for follow-up appointments will vary between different services or specialties, and between individual patients, depending on the severity of their condition. That is why all follow-up appointments should take place when clinically appropriate. For patients who require further planned stages of treatment after their “referral to treatment” waiting time clock has stopped, treatment should be undertaken without undue delay and in line with when it is clinically appropriate and convenient to the patient to do so.

The hon. Gentleman and the hon. Member for Battersea both raised the matter of a national eye health strategy. The Department takes sight loss very seriously. We are working with NHS England to ensure that the commissioning and development of eye services are of high quality and sustainable. I look forward to meeting the hon. Lady to discuss all matters relating to vision and sight loss.

CCGs are responsible for commissioning all secondary care ophthalmology services, and are also available to commission primary care services such as minor eye services and monitoring, in the community, to meet identified need. It is therefore right that the planning and commissioning of high-quality eye care services that meet the needs of the local population should happen locally, not at a national level.

The hon. Member for Enfield, Southgate, also referred to the national ophthalmology database, and asked that it be expanded to collect data on AMD. Data is currently collected on cataracts as part of a five-year programme funded by NHS England. I understand that at an earlier stage the programme funding panel considered expanding the focus, but decided that the focus should remain on cataracts in that time-limited audit.

I recognise the hon. Gentleman’s concerns and thank him for raising the matter. We are working incredibly hard, alongside NHS England, Public Health England and other partners, to ensure that eye care policy is focused both on preventing disease and, where disease develops, on ensuring that there are high-quality, sustainable eye care services for people across the country. I hope that the significant focus on effective treatment, prevention and AMD research that I have outlined means that he can reassure his constituents that we take AMD incredibly seriously. Maintaining good vision throughout life is of the utmost importance, especially as we grow older.

[Jim Shannon]

It might be helpful to give the Minister the report of the inquiry by the all-party parliamentary group on eye health and visual impairment. Perhaps she would agree to meet the officers of the all-party group, so that they can advance that case.

[Seema Kennedy]

I very much look forward to reading the report of the APPG that the hon. Gentleman chairs, and to sitting down with him in due course.

My Department remains committed to preventing sight loss and to ensuring that anyone and everyone living with AMD has access to the very best treatment and support.

Question put and agreed to.