Age-related Macular Degeneration: NHS Funding

Bambos Charalambous Excerpts

Tuesday 9th April 2019 Westminster Hall

[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?

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[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.