Long-term Medical Conditions

Shockat Adam Excerpts

Thursday 12th June 2025 Westminster Hall

[Shockat Adam (Leicester South) (Ind)]

It is a real pleasure to serve under your chairship, Mr Efford. I thank the hon. Member for Bury St Edmunds and Stowmarket (Peter Prinsley) for his learned and absolutely excellent speech. I will focus on my profession as an NHS optometrist and discuss the impact of sight loss from long-term conditions.

Let us imagine a young mother-to-be sitting in my consulting room glowing with excitement, whose joy turns to fear as I gently explain to her that her sight is deteriorating—all of a sudden it becomes a race against time; she may never be able to see her baby clearly. Or let us imagine the teenage boy with dreams of a rugby career who leaves my room with the life-changing knowledge that he is losing his vision. Unfortunately, those are not extraordinary cases; they are everyday tragedies in my workplace.

These long-term conditions are often framed in terms of physical health, but as someone working with patients losing their sight, I see—as the hon. Member already eloquently articulated—the more profound, layered consequences everyday: the emotional trauma, isolation and loss of independence, and the inevitability of declining mental health, which I want to concentrate on.

For example, macular degeneration is the leading cause of blindness in the UK. It does not just take away people’s central vision; it also affects their ability to read, recognise faces and drive. That means grandparents may never be able to see the faces of their grandchildren; tears are a natural result of such a devastating awareness. There is also a condition called glaucoma—generally diagnosed later in life—known as a thief of sight, because it creeps up on someone silently, often unnoticed, until irreversible damage has been done. It steals more than vision; it robs people of confidence, safety and the ability to live independently. For many, the diagnosis comes too late, and with it comes a slow loss of identity.

Sight loss is not just a health issue but a social one, and its impact is profound. More than 4 million people in England with a long-term physical health condition also live with mental health problems. Those individuals experience significantly poorer outcomes and shorter life expectancies, and economically the toll is massive: between £8 billion and £13 billion a year, or at least £1 in every £8 spent on long-term conditions, is linked directly to poor mental health and wellbeing.

One extremely overlooked condition—I suspect many people have not heard of it—is a consequence of vision loss called Charles Bonnet syndrome, which causes people to see vivid hallucinations as the brain attempts to fill in the gaps left by the reduced sight. The images can be repetitive patterns, but more often and distressingly they can be realistic visions of people, sometimes long deceased, or landscapes.

Let us imagine that a person who is elderly, fragile and possibly alone is diagnosed with sight loss, and all they can see is their long-lost childhood pet—it is beyond frightening. It is not a mental disorder, yet many patients suffer in silence, afraid to talk about the hallucinations for fear of being misunderstood and misdiagnosed. Research suggests that at least one in five adults with sight loss will experience Charles Bonnet syndrome—more than 1 million people in the UK—but the figure is probably even higher. Children are affected too, but we are only beginning to understand their experiences.

People living with long-term conditions such as macular degeneration, glaucoma and diabetic retinopathy face a constant battle not just with their illness, but with a system that is not designed to meet the complex, long-term nature of their needs. We need a change in the Government’s upcoming 10-year healthcare plan, and I have some suggestions for that. We should recognise sight loss and associated conditions such as Charles Bonnet syndrome as part of the national long-term conditions framework.

We need routine mental health screening and support for people with chronic vision impairment—in fact, for all long-term conditions. We need training for all healthcare professionals, as the hon. Member for Bury St Edmunds and Stowmarket said, in integrated work, so that optometrists, GPs and nurses identify patients and support them with the psychological impact of the illness. NHS funding models and care pathways should be redesigned to reward integrated care and cross-speciality collaboration, especially where physical and mental health intersect. We need investment in early detection and care pathways.

Long-term conditions shorten lives not only through the body but through the burden they place on the mind. If we do not act, we will be complicit in that erosion. But if we do act—if we integrate care, listen to patients, fund innovations and remove stigma—we can change what it means to live with long-term conditions in this country. Let us ensure that people living with long-term health conditions, whether heart failure, arthritis, diabetes or sight loss, are not left to fall through the cracks. Sight is not a luxury, independence is not optional and suffering in silence must never be acceptable.