Glaucoma Awareness

Shockat Adam Excerpts

Wednesday 9th July 2025 Westminster Hall

[Shockat Adam (Leicester South) (Ind)]

I beg to move,

That this House has considered glaucoma awareness.

It is a real pleasure to serve under your chairship for the first time, Mr Pritchard. I thank all right hon. and hon. Members for attending this important debate. First, I declare my registered interest as a practising optometrist for the NHS. As an optometrist for many years, I have had the privilege—sometimes the heartbreak —of looking into the eyes of people whose lives are changing without their even knowing about it. Fundamentally, that is what glaucoma does: it changes lives quietly, and often without warning. Last week was Glaucoma Awareness Week because many people are not aware of the condition.

At this point, I applaud the work done by Glaucoma UK to raise awareness of the condition. It is known as “the thief of sight” for very good reasons. Broadly speaking, glaucoma damages the optic nerve. The optic nerve is made of millions of little nerves and bundles, and each part of the nerve represents a single point in our visual fields. Because vision loss begins at the edges, people do not often realise that anything is wrong until it is too late.

I would like to give two brief but real examples from my experience. First, a woman came into my practice who had been hit by a car, while in her own car, from the side, not once but twice. She came in and read out the bottom line—the tiniest letters that can be seen—and could not understand why she kept missing things on the side: in this case, cars. It became apparent that she was a quite advanced sufferer of glaucoma, and she had lost the majority of what we call peripheral or side vision. Another memorable patient was a gentleman who was brought in kicking and screaming by his wife because he kept knocking off the salt, pepper and ketchup from the dinner table. It became apparent, again: he could see everything clearly straight ahead, but he really could not see anything on the side. He also had a very advanced form of glaucoma.

Glaucoma is the leading cause of preventable blindness in this country, with over 700,000 people affected, but the shocking thing is that more than half of them—350,000 people—are undiagnosed: they are walking and driving around not knowing that they have the condition. They could be one of us—somebody we love, or somebody we work with, as was the case of a former Member of Parliament of this parish, Paul Tyler, a Lib Dem Member, who was diagnosed at a completely routine eye test. In his own words, he might not have been able to carry on his duty as a parliamentarian if he had not gone for a simple eye test where they detected glaucoma. Twenty-five years later, his sight is still preserved.

[Mr Gregory Campbell (East Londonderry) (DUP)]

I congratulate the hon. Gentleman on securing the debate. He rightly alludes to the issue of regular eye testing. Although we obviously want a response from the Minister, does he agree that if nothing else is achieved from this debate but raising people’s awareness about doing exactly as he recommends—and all of us recommend regular eye testing—to detect conditions such as glaucoma, he will have done us all a service?

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[Shockat Adam]

I could not agree more. If we achieve that one thing today, we will have achieved a great milestone. In its early stages, glaucoma has no symptoms, pain or warning signs—just a slow, silent theft of vision. By the time it is noticed, the damage is permanent; it is as if the fire has gutted the house before anybody has even smelled the smoke. That loss has far-reaching consequences. People lose not only their sight but, more importantly, their independence—their ability to drive, read, cook or even leave the house. Falls increase, isolation grows, and then come the emotional and mental health impacts: fear, depression and loss of identity. At this point, I quickly pay homage to charities such as Vista in my constituency, which has offered valuable support for people living with visual loss.

On the subject of depression and identity, I want to share a moment that has stayed with me; it concerns a rare condition that many people do not know can be a consequence of vision loss. A woman, diagnosed with glaucoma, phoned my clinic, deeply distressed. She said a child was following her—but no one else could see them. She was terrified that she was losing her mind. In fact, she had a condition called Charles Bonnet syndrome, a common but under-recognised condition in which the brain fills in visual gaps with vivid hallucinations. Many people never mention it, understandably fearful that they will be labelled as senile or unstable, and so they suffer in silence. Esme lived with Charles Bonnet syndrome for over a decade, haunted by hallucinations that she knew were not real. Her daughter, Judith, now champions awareness through the incredible organisation, Esme’s Umbrella. These are not clinical oddities; they are real human stories, and far more common than we acknowledge.

We are now facing a growing crisis. Work done by the Association of Optometrists, Primary Eyecare Services and Fight for Sight has shown that glaucoma cases are expected to rise by 22% in the next 10 years and 44% in the next 20 years. That is hundreds of thousands more people needing care, follow-up and support, yet we already have the tools to stop this.

I would like to frame this, Minister, around the three bases of the Government’s own proposals for tackling healthcare. First, we must move from hospital to community. Patients are losing their sight not because care does not exist, but because the pathway is broken and follow-up is delayed. Just recently, a patient of mine was referred to hospital and diagnosed with glaucoma—fine, no problem there. The initial appointment happened without any problems, but the follow-up was postponed. Then the patient missed her appointment, and the one after that was postponed again. By the time I saw that patient again, just over a year later, they had lost two full lines on their visual acuity chart—the chart used by the optician. That is two lines that this patient will never, ever get back. That is the difference between being able to read letters or not; between seeing a grandchild smile or only hearing them.

One of the problems is that current waiting list data measures only first-time appointments, not the ongoing care vital to chronic conditions such as glaucoma. We need published data on follow-up waiting times, because that is where sight is being lost. That data would allow patients to make an informed choice about where they would like to receive treatment.

Here is the reality: hospital ophthalmology is the largest outpatient specialty in the NHS, with 8.9 million appointments in England in 2023-24, according to the College of Optometrists. It cannot carry that load alone. The answer lies in the community. There are over 14,000 qualified optometrists in England, providing more than 13 million eye tests. They are trained, regulated and ready to help.

Community glaucoma services led by optometrists have already demonstrated the ability to reduce hospital referrals by up to 79%. If we implemented a nationally regulated programme, it could free up 300,000 hospital appointments a year. That is not a one-time saving, because glaucoma is a chronic condition. People are not cured of it—they live with it, and must continue with recurring appointments for the rest of their lives. Shared care would allow faster appointments, earlier diagnosis, less vision loss, and critically, more time for hospital ophthalmologists to treat complex cases. It could also save the NHS an estimated £12 million annually.

Wales has already adopted this model; England should do the same. Yet fewer than one in five areas in England offers this service. It is a postcode lottery—one that punishes the most vulnerable, especially given that people from black and Asian communities are up to four times more likely to develop glaucoma and often have the least access to care. We need to raise awareness and create the statutory framework so that everyone—GPs, pharmacists, the public—knows to go the optometrist for an eye test. We need a national roll-out of a statutory integrated glaucoma pathway.

Secondly, we must move from analogue to digital; lack of digital connectivity is another major obstacle. Many optometrists are unable to send digital referrals to local hospitals. Some do not even have access to NHS email and we still cannot access shared patient records. That means crucial information such as medication, medical history and images get lost, delayed or duplicated. This is 2025. It should not be easier to get a takeaway delivered than to refer a patient with a sight-threatening disease. To move forward, we need access to NHS email for all primary eye care providers; shared patient records between optometrists, GPs and hospital services; and an efficient two-way electronic referral system. That kind of interoperability is basic infrastructure and would transform the speed, safety and continuity of glaucoma care.

Finally, we must move from sickness to prevention. The final and most important pillar is prevention.

[Ayoub Khan (Birmingham Perry Barr) (Ind)]

I congratulate the hon. Member on securing this debate. I know that he is very passionate about this area. More than half a million people suffer from the illness. Would he agree that the issue is about not just a national roll-out and getting an understanding, but a proactive approach where general practitioners make referrals for individuals whom they know are at a higher risk?

[Shockat Adam]

The hon. Gentleman may have read my speech when I was not looking, as I am coming to that point in a little while.

Regular eye exams are the frontline of glaucoma detection, yet one in four people in the UK is not accessing any form of eye care at all. Minister, we should begin with a mandatory sight test for drivers. The UK is the only country in Europe that gives lifelong licences until the age of 70 without requiring an eye exam. Earlier this year, a coroner in Lancashire issued a prevention of future deaths report linking a fatal crash to undiagnosed sight loss. This is no longer just a health issue; it is a public safety one. We can also incentivise eye tests, perhaps through reduced insurance premiums, employer wellbeing programmes or GP-led initiatives. For those over 40, when glaucoma risks are higher, every routine health check should include a simple question: “When did you last have your eyes tested?”

Finally, we must consider innovation. Most glaucoma patients are prescribed lifelong eye drops, but there is poor compliance. Mr Pritchard, imagine that you were elderly and trying to open up a bottle of eye drops and bring it to your eyes. It is very difficult, especially with arthritis and tremors; difficulty inserting the drops remains a major challenge. But new options are now available. One is called minimally invasive glaucoma surgery, which can delay or even eliminate the need for drops. I urge the Minister to explore commissioning MIGS, especially for suitable patients undergoing cataract surgery. Everybody who lives long enough will need to have a cataract operation. If they are also suffering with glaucoma, we can stop the disease in its tracks before it causes irreversible harms. It is critical that patients with glaucoma who need cataract surgery are able to discuss options with their glaucoma consultant, because if MIGS is not performed during cataract surgery, it may be eliminated as a future option.

The total cost of visual impairment in the UK is now £26.5 billion. That is projected to rise to £33.5 billion by 2032. Glaucoma alone accounts for £750 million, according to the College of Optometrists, and most of that burden falls outside the national health service in lost productivity, in formal care, in people having to give up work to look after family who have lost their sight and in a completely diminished quality of life. In fact, 41% of people surveyed reported severe financial impact due to sight loss, often followed by depression, anxiety and social withdrawal.

This is a silent epidemic and it all leads to a low score in every perceivable index. But it is not inevitable. We already know what works and we already have the workforce and technology. What we need now is collaboration from the optical and ophthalmic industry and a political will. That will help us shift care from hospitals into the community, bring eye care into the digital age and help us prevent sickness such as glaucoma, saving the sight of millions in the future. Let us act now while we can still see what is around us.

[Brian Leishman (Alloa and Grangemouth) (Lab)]

It is a pleasure to serve under your chairship, Mr Pritchard. I extend my thanks to the hon. Member for Leicester South (Shockat Adam) for securing this important debate. When the time comes, I will welcome an intervention from him to help me pronounce the name of the eye operation that I had, because I can never say it.

I often say that all politics is personal, and that is incredibly apt for me in this debate, because 17 years ago, when I was 25, I was diagnosed with glaucoma. Pre-diagnosis, my knowledge of the condition extended to Edgar Davids, the Dutch footballer who wore what looked like safety goggles when playing because he had glaucoma and could not wear contact lenses.

Unlike many people’s glaucoma stories, mine is a very fortunate one. Before coming to this place, I was a golf professional. At the time, I was giving lessons to an optician, who offered to gift me a pair of glasses as thanks—I know that sounds a familiar story for a Labour politician, but I move on. He did some tests, including for glaucoma, and commented that my eye pressure was extremely high, in the mid-30s. Within the hour, I was in the ophthalmology clinic at Perth royal infirmary and was diagnosed with glaucoma.

Dr Cobb, who became my consultant, saw me at Perth royal that afternoon and has been absolutely incredible ever since. She explained to me that I was very lucky: if I had continued undiagnosed, I would probably have had another decade or so of eyesight and then would have woken up one day, in my mid-30s, unable to see. There would have been nothing she could have done for me; I would have been blind. The glaucoma was totally symptomless, and it is irreversible—those are the real dangers.

[Shockat Adam]

I always recall a patient of mine who was diagnosed with glaucoma at a very late stage. She came into the practice with a wad of cash and said, “Give me the best glasses and lenses you have, so I can see again.” Unfortunately she had glaucoma, and the vision was lost. There was nothing that money could buy.

[Brian Leishman]

That is not the first time I have heard that. I have another optician friend, who said that that has been a regular occurrence in his career. Someone may not know that they have glaucoma until it is too late.

I was prescribed eye drops. I went through a few options, with not much success, until I ended up on three different drops: bimatoprost, brinzolamide and brimonidine. All three go in my left eye at bedtime and then again the next morning, and then just brimonidine in my right eye at bedtime and again the next morning.

My right eye needs only one set of drops because it has been operated on. It has had a trabeculectomy—I hope that pronunciation was close enough. The operation was needed to save the eyesight in my right eye. It was an operation under general anaesthetic to make an incision in my eyeball to allow pressure to disperse and not attack my optic nerve. After an overnight stay in hospital, I wore an eye patch for a week, with no bending over for a fortnight and four weeks off work. I had a good report from Dr Cobb, and have had eye drops twice a day and twice-yearly check-ups at hospitals since. I really am lucky.

As well as my thanks to my consultant, I want to record my appreciation for my optician, Eddie Russell of Norman Salmoni, who provides regular check-ups between hospital visits, and for the outstanding care that his practice provides.

All that goes to show that the NHS really is our greatest invention. Personally, I reject the language of the NHS being broken. It is not broken; it is underfunded. The staff deserve more. They deserve the very best.

I cannot emphasise enough how important it is to get tested. Testing could be the difference between retaining one’s eyesight and not. I thank hon. Members for permitting me to share a bit about my ongoing glaucoma journey. Glaucoma cannot ever be cured, but we can try to manage the decline somewhat.

--- Later in debate ---

[Shockat Adam]

It has been a real pleasure to serve under your chairship, Mr Pritchard. I thank each and every hon. Member for their contribution. I think we have achieved the first objective, which was to raise awareness of glaucoma, and we should keep the conversation going. As my neighbour, the hon. Member for Hinckley and Bosworth (Dr Evans) said, we have an ageing population. If nothing is done, very soon there will be more than half a million people walking around with this condition. That is why it was pleasing to hear that the Minister remembered our meeting, which was early on in our tenure; I can assure him we will continue to have that meeting every time he sees me about eye health.

I would like to take this opportunity to thank the people in the Public Gallery: we have people from the Worshipful Company of Spectacle Makers, the General Optical Council, the College of Optometrists and Glaukos —my apologies if I have forgotten anybody there. We must utilise optometry as the primary eyecare provider that it is, and treat it as such, equivalent to how we treat our GPs and pharmacy colleagues. We need a statutory framework to regulate the whole process of detection, monitoring and treating glaucoma. Working collectively with the optical and ophthalmic bodies and the Government, we can surely do our best to keep people from suffering preventable sight loss and the devasting impact that that has on their lives.

Question put and agreed to.

Resolved,

That this House has considered glaucoma awareness.

Terminally Ill Adults (End of Life) Bill

Shockat Adam Excerpts

Report stage
Friday 13th June 2025 Commons Chamber

[Dr Spencer]

I thank the hon. Member for his intervention. Of course, these are difficult things to disentangle. People will say, “You would say this, wouldn’t you, Ben?”, but we should get the person in front of a psychiatrist or a clinical nurse specialist working in psychiatry. This is what psychiatry does; this is what it is about. That is why I tabled amendments to ensure that the person is put in front of a psychiatrist as part of the process to deal with the blind spot. [Interruption.] Apologies, Madam Deputy Speaker; I will finish now.

My amendment would ensure that the code of practice clarifies the interaction with services.

[Shockat Adam (Leicester South) (Ind)]

Will the hon. Member give way?

[Dr Spencer]

I think I am pushing it.

I tried to intervene on the hon. Member for Spen Valley (Kim Leadbeater) to ask what she thinks about that. She is welcome to intervene on me now if she has further points to add. Otherwise, I ask the Minister to address those points.

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[Blair McDougall (East Renfrewshire) (Lab)]

I rise to speak in support of amendment 15, which is tabled in my name. I will minimise my comments to maximise the time available to other hon. Members.

Owing to the widespread unease among NHS practitioners and the growing number of concerned voices about the Bill’s shortcomings, if it is passed by the House—I still hope that it will not be—it is likely that assisted deaths will take place away from the public sector. Indeed, the Bill does not prevent assisted deaths from being outsourced to private companies, and there is no definition of what “reasonable remuneration” means in return for helping to end someone’s life. My amendment seeks to ensure that providers publish annually the number of people to whom they have provided those services, the costs of doing so, and the revenues received in return.

Many hon. Members will be guided by their religion when they vote on these issues. Although I deeply respect that, I am not a person of faith. If there is a booming baritone voice appealing to my conscience, it is not that of God, but that of Nye Bevan, who was concerned about the commodification of care. In his time, the worry was about the role of the market in extending life. Today, my concern is about the potential role of the market in ending it.

Throughout the Bill’s passage, we have discussed different kinds of coercion by individuals on the lives of people whose protection is entrusted to us. As a Labour MP, I do not think that we can have this debate without addressing the economic coercion experienced by the vulnerable in our society. As someone who has sat beside a bed and prayed for mercy, I genuinely understand the attraction of arguments around freedom of choice, but arguing for that as a fundamental principle in isolation, without also acknowledging the economic, social and cultural context in which people make such choices, is not a Labour approach to the issue.

[Shockat Adam]

Does the hon. Member agree that no matter how many new clauses we introduce, we cannot militate against people being vulnerable, particularly financially? According to the charity Mind, 2.7 million people in this country have considered suicide because of financial hardship. How could we militate against that?

[Blair McDougall]

The hon. Member makes an important point that we have to consider. We must recognise that, as he says, people’s choices are limited by the unfair distribution of wealth, the injustices that disabled people face throughout their life, or the attitudes of the powerful in society towards those who are less fortunate.

Dementia Care

Shockat Adam Excerpts

Tuesday 3rd June 2025 Commons Chamber

[Caroline Voaden]

There is a lack of equity, is there not? I looked at Hansard, and dementia has been mentioned 192 times since the general election last year, but cancer has been mentioned nearly 1,000 times—we have spoken about cancer five times more than we have about dementia. That shines a light on what a hidden problem it is, and yet it is not hidden, because we all have experience of it.

We must urgently examine the funding and availability of care homes and find a way to reduce the staggering costs, which can cripple family finances and local authority budgets. House of Commons Library research commissioned by the Liberal Democrats has shown that the cost of care in nursing homes increased by 61% from 2015 to 2022. That is why the Liberal Democrats are calling for the introduction of free personal care in England, based on the model introduced by the party in government in Scotland in 2002, so that provision is based on need, not ability to pay.

[Shockat Adam (Leicester South) (Ind)]

The hon. Member is being extremely generous with her time. Is she concerned, along with the Alzheimer’s Society, that more than 71% of carers for people with dementia have no formal training whatsoever, although dementia requires very specific care and training? Will she join me in calling on the Government to introduce mandatory training for all those who care for our loved ones with dementia?

[Caroline Voaden]

I thank the hon. Member for his intervention—I have not quite got there yet, but it is in my speech. We are also calling for a cross-party commission to form a long-term agreement on sustainable funding for social care in England.

Last week I met journalist John Suchet, whose wife Bonnie died of dementia. He is now married to Nula, who lost her husband James to a rare form of dementia known as Pick’s disease, diagnosed when he was just 57. John and Nula met in the care home where they were supporting their partners. They supported each other along a terrible journey and have both since written books about their experience. In Nula’s book she says:

“Dementia, dementia, what is it? I still know very little. All I know is, it’s a bloody cruel, sadistic disease, that has demolished my hopes, plans and dreams. It has taken away my life, twisted it and mangled it, and so it can claim another victim—two for the price of one…With absolutely no professional support—no-one at all monitoring his or my journey as they would, for instance, a cancer or Parkinson’s patient. I am entirely alone.”

It should not and must not be like that for the carers who give up everything to look after someone they love.

This is where the Government must step in. We need a clear strategy to support people with dementia and their families at every stage. That starts with an urgent review of NHS continuing healthcare, so that dementia-specific needs, especially cognitive and behavioural needs, are properly recognised, with specialists involved in assessments. No one should face dementia alone. Families must have access to a specialist dementia nurse, regular health and wellbeing reviews, and co-ordinated, joined-up care. We also need a national framework for young onset dementia, ensuring timely diagnosis, tailored support, and fair access to care. To relieve pressure on hospitals, every NHS acute trust should have a specialist dementia nurse service, backed by ringfenced funding.

Investing in dementia support will clearly save the NHS money in the long term. I am sure the Minister knows these statistics, but I will read them out: people with dementia visit the GP three times more often than someone without dementia; 25% of people with dementia living in their own homes are admitted to hospital with a potentially treatable condition; 25% of hospital beds are occupied by people with dementia, and they stay in hospital twice as long as other people aged over 65; and 43% of people with dementia in hospital are there due to urinary tract and chest infections, both of which are treatable at home.

A voluntary, community and social enterprise response to the closure of the Devon adviser service showed that dementia support workers are cost-effective, and that every £1 invested in dementia support worker roles results in almost £4-worth of benefits. Compare that with the cost of a hospital stay. Over 85% of dementia patients with a hip fracture stay for up to 14 days, and 34% for over a month, despite the national average length of stay being just seven days. The extra cost is estimated at around £6,000 per patient. The Alzheimer’s Society said between 2015 and 2020,

“almost 336,000 admissions costing almost £1 billion to the NHS were for chest infections, delirium, falls and UTIs, all of which can be prevented or managed well in the community.”

Clearly, this is a strong case for invest to save.

Clinical care must go hand in hand with long overdue social care reform. The Liberal Democrats are calling for a comprehensive social care workforce plan, the creation of a royal college of care workers, and a higher carer’s minimum wage to reflect the value of this essential work. Unpaid carers also need support, with paid leave, respite breaks, and proper recognition. Finally, we must expand dementia training across the sector, backed by a national care agency to uphold standards and register care workers. The Care Quality Commission has just published a report that underlines the importance of reform. Its findings were alarming, confirming that health and social care staff frequently lack understanding about the specific needs of dementia patients. The Alzheimer’s Society estimates that only 29% of paid carers have training in dementia.

Dementia is a growing issue and the system is already under strain. Right now, approximately 30% of general hospital beds in Devon are occupied by people with dementia, many of whom are there because of preventable conditions. A sustainable strategy for dementia care must focus on community-based support, early diagnosis, carer support and workforce training. That is not only the right thing to do; it will save money in the long run. It is time that we treated dementia care not as a burden, but as a vital part of building a compassionate and sustainable future for everyone affected.

Mental Health Bill [Lords]

Shockat Adam Excerpts

2nd reading
Monday 19th May 2025 Commons Chamber

[Shockat Adam (Leicester South) (Ind)]

It has been humbling to be part of this debate and to hear powerful contributions from hon. Members who have so much knowledge, in particular the hon. Member for Runnymede and Weybridge (Dr Spencer) and the hon. Members for Dorking and Horley (Chris Coghlan) and for St Neots and Mid Cambridgeshire (Ian Sollom), who made emotive speeches.

I welcome the Bill and the Government’s recognition that the current legislation is no longer fit for purpose. With over 54,000 people detained under the existing Mental Health Act, this is an opportunity to modernise a system that often fails to provide care fairly and effectively. We have heard brutal testimony of that today.

Although I support the direction of the Bill, one area that needs greater attention is the impact on young people. We are seeing a clear and worrying rise in mental health issues among children and teenagers, yet the Bill does not fully guarantee them the same rights and safeguards as adults. There is still no statutory test for decision-making capacity for under-16s. Without it, many young people could miss out on key rights such as choosing a responsible nominated person or accessing the protection around informal admission.

Current guidelines say that children should be placed on adult wards only in exceptional cases, but that is still happening far too often. In 2022-23, nearly 200 children were admitted to an adult psychiatric ward. These environments are not designed for them. Children who are placed there can lose access to education, peer support and age-appropriate care. This must change. It is not only adult wards that are of concern to me but the fact that many children are sent to live far away from their homes and support structures, even to other towns. We must have statutory provision to stop this happening.

Turning to racial inequality, the data continues to tell a stark story. Black people are nearly four times as likely to be detained under the Mental Health Act and seven times more likely to be placed under a community treatment order. Those orders were meant to reduce hospital readmission, but they often do not achieve that aim. Instead, they feel indefinite, coercive and difficult to challenge, and many say that they erode the trust between families and healthcare providers. That is why I support either abolishing CTOs altogether or ensuring that they are subject to regular independent reviews with clear criteria.

I also support the call to have a person in every trust who is responsible for race equity—someone with authority and visibility to ensure that training, policy and data are used effectively to address local disparities. We need national accountability too. That is why an annual report by the Secretary of State, broken down by protected characteristics, is vital. If we are serious about reducing inequality, we must measure, understand and act on it.

Finally, on autism and learning disabilities, I support the decision to remove the ability to detain people without a co-occurring mental health condition. However, there are real concerns that, without proper support in the community, people may end up being misdiagnosed just to fit the criteria for detention, or may be left without appropriate care altogether. We need a clear, costed plan for supporting integrated care boards and local authorities to deliver the care people need in the community. That means targets, proper funding and safeguards to prevent delays and poor outcomes. We cannot afford a system where a lack of planning results in another decade of delays for this vulnerable group.

The Bill is an important step forward, but it is not enough on its own. If we want meaningful change, we need investment, accountability and a stronger focus on the rights of the people who depend on mental health services every day. We are all responsible for ensuring that this legislation does more than just change the law. It must change lives.

Brain Tumours: Research and Treatment

Shockat Adam Excerpts

Thursday 8th May 2025 Commons Chamber

[Shockat Adam (Leicester South) (Ind)]

I salute the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh) for securing this debate. Hopefully we can turn her personal tragedy into a national triumph if we work together. She is absolutely correct in saying that individually, certain types of brain tumours are very rare, but collectively they are very common. The simple fact that only 1% of our national cancer research funding goes to them is absolutely unacceptable.

I refer Members to my entry in the Register of Members’ Financial Interests, as I am a national health service optometrist. I will speak on that topic, because a simple eye test can detect a brain tumour, as the hon. Member for Strangford (Jim Shannon) said. I have unfortunately—or fortunately, in certain cases, because we have been able to detect them early—been in the position of seeing people who are completely asymptomatic or people coming in with a simple headache having brain tumours detected. That is why I really want to emphasise that the avenue of using eye tests is undervalued and underutilised. They are completely un-invasive, cost efficient and accessible, and they can save so many lives. Is it at all possible for us to have a national awareness campaign as part of a broader body to ensure that eye tests can be linked to brain tumours, so that they can be detected?

[John McDonnell]

I pay tribute to Mr and Mrs Atwal in my constituency, who lost their daughter and have been doing fundraising. One of the most effective things they have been doing is ensuring that at local community events there is a stall that provides information about how to access a diagnosis. That has proved to be incredibly effective, as a range of other professionals have picked up on the information. I pay tribute to Mr and Mrs Atwal for their creativity.

[Shockat Adam]

This is about awareness campaigns. People should be aware that 39%—I think—of children unfortunately diagnosed with a brain tumour experience some kind of sight loss or vision changes, and one in three people diagnosed report a problem with their vision that converts into a brain tumour. An eye test cannot detect all brain tumours, but it is a really valuable tool.

Over 112,000 people have signed a petition demanding that brain tumour research is no longer left behind. These are not just signatures; as we have heard from today’s powerful testimonies, they are families, and they are stories of lives cut short and missed chances. We cannot allow that to continue any longer.

Oral Answers to Questions

Shockat Adam Excerpts

Tuesday 11th February 2025 Commons Chamber

[Ashley Dalton]

I am happy to meet my hon. Friend and his constituent to discuss all of those matters of concern—I look forward to doing so as soon as my diary will allow.

[Shockat Adam (Leicester South) (Ind)]

The eyes are not only the windows to the soul, but a window to our health. Last week I had the pleasure of meeting the team at Moorfields eye hospital who, alongside a team at University College London, have done some work on a simple retinal scan that can detect Parkinson’s disease seven years prior to any symptoms. Does the Minister agree that optometry, eye care and eye health should be at the forefront of NHS England’s plan for integrated care, and that we should bring forward a national eye health strategy?

Speech and Language Therapy

Shockat Adam Excerpts

Monday 27th January 2025 Westminster Hall

[Shockat Adam (Leicester South) (Ind)]

It is a pleasure to serve under your chairmanship, Mr Vickers. Not being able to articulate one’s thoughts verbally is, I suspect, not something that many of my parliamentary colleagues suffer with, but unfortunately it is the truth for hundreds of thousands of people in this country.

Speech therapy is not limited to children, as was mentioned by the hon. Member for Lichfield (Dave Robertson), who I am grateful to for bringing this debate to the Chamber. There are countless adults in need of speech therapy services. Those include stroke survivors who are relearning how to speak—which is why it is such a pleasure to speak with Chris, who is here in the Public Gallery and is a true hero in the footballing world—as well as people with cleft conditions or those living with dementia. I thank the hon. Member for Lichfield for spotlighting long covid, because that is an issue that will be with us for many years to come.

The need in the adult sector is significant, but today I will focus on children because they represent our future, and without intervention at a critical stage the challenge they face will only grow. I have not had the pleasure of meeting Mikey, but I would like to know if this resonates with him. Imagine a child starting school for the first time: friendship and bonds are made, and classmates are eagerly raising their hands, making friends and joining in chatter in the playground, but the child remains silent—not because they do not want to speak, but because they cannot. Their words are locked away and their thoughts are trapped. Thousands of children face that challenge daily and they are getting left behind, not because they lack potential but simply because they lack support. That is the silent struggle of thousands of children in our country.

Speech, language and communication difficulties are not just a health issue but a life one—they affect mental health, academic success, employment, and relationships. They are a barrier to participating fully in our society. Over 369,000 pupils in England were identified as having speech, language and communication needs in 2023-24. That is a staggering 64% increase since 2015, and yet, as of November 2024, more than 65,000 children were waiting for speech and language therapy, with nearly half waiting for over 12 weeks. The impact of that delay cannot be overstated. Worryingly, in socially deprived areas, upwards of 50% of children start school with impoverished speech, language or communication. Those delays snowball, creating challenges in literacy, learning, and most importantly, social integration.

It is concerning that research shows that more than 60% of young offenders have difficulties with speech. Is that the postcode lottery that the hon. Member for Lichfield talked about? The cycle of disadvantage starts with communication barriers, and it can end in exclusion, isolation or even worse. It is now a crisis. Speech and language therapists are overstretched, underfunded and working in systems that fail to meet the demand of local needs. However, there is a solution within reach.

Speech and language therapy changes lives. It is not about helping children speak clearly; it is about unlocking their potential. It gives them tools to learn, connect and thrive. It breaks down barriers to education and opportunity, and with timely intervention children can overcome those difficulties and go on to succeed in school, work and life. In 2015, the Royal College of Speech and Language Therapists commissioned research to estimate the benefits of speech and language therapy compared to the cost of not doing it. The results showed that for every £1 spent on speech and language therapy, £2.30 in healthcare savings was delivered. Speech therapy is not a cost; it is an investment in the future of our society. We need urgent action.

First, we need increased investment to reduce waiting times and to ensure every child, no matter their background, gets the support they need. Secondly, we need improved workforce planning that addresses the shortages of speech and language therapists across all sectors—health, education, social care and justice. Thirdly, we need universal proactive provision, so that support is fully preventive, rather than reactive and limited. Those changes align with the Government’s stated priorities. Communication is fundamental to all areas of public policy—it touches economic growth, an NHS fit for the future, safer streets and breaking down barriers to opportunity.

This is the moment to decide whether we will act. Will we allow those children to struggle in silence, or will we give them a voice? Lastly, I urge the Government to meet with Mikey Akers and the Royal College of Speech and Language Therapists to discuss workforce retention and development. Let us invest in our future and ensure that every child has a chance to be heard, to succeed and to thrive.

Rare Retinal Disease

Shockat Adam Excerpts

Thursday 23rd January 2025 Westminster Hall

[Shockat Adam (Leicester South) (Ind)]

What a pleasure it is to serve under your chairmanship, Dame Siobhan. In my time in the House I have written speeches for Westminster Hall that are five, six or seven minutes long, but by time I get here the Chair always tells me that I have a minute, so I only wrote a minute-long speech.

[Dame Siobhain McDonagh (in the Chair)]

The hon. Gentleman can go on for as long as he likes.

[Shockat Adam]

The hon. Member for Strangford (Jim Shannon) said, “Do what I do and expand it.” This subject is extremely important, and I am so grateful for the hon. Gentleman for bringing it to this Chamber.

Imagine a mother-to-be sitting on a consulting room chair. Her excitement at becoming a mother has been overshadowed by the news that she has been diagnosed with Stargardt disease. It is literally a race against time: will the child be born or will the sight be lost? Imagine a young boy who has expressed his ambition to become a rugby player for England, only for a cursory investigation at the back of the eye to detect retinitis pigmentosa. Unfortunately for me, that was my reality as an optometrist. I faced such heartbreaking cases regularly in my profession.

Rare retinal diseases such as retinitis pigmentosa, Stargardt disease and Leber congenital amaurosis, among many others, are individually rare but collectively very significant. They devastate and destroy lives. The hon. Member for Strangford mentioned Chris, the victor of “Strictly Come Dancing”; he shows the potential of the majority of people with sight loss, but unfortunately that is not the reality for most—their lives are destroyed, their independence is taken and opportunities at work are limited.

The UK Government have committed to tackling rare diseases through initiatives such as the UK rare diseases framework, which aims to improve diagnosis, raise awareness and enhance the access to specialist care. Additionally, a new action plan is set to be released in 2025, showing promise for further progress. But commitments need to translate into tangible action.

Furthermore, we need regulatory bodies such as NICE to play a pivotal role. I fully appreciate NICE’s work to ensure that the quality and safety of treatments can never be compromised—those principles are non-negotiable —but to encourage innovation, NICE must proactively engage with pharmaceutical and medical companies to work collaboratively to establish best practices. Such dialogue will signal to companies that their commitment to researching rare diseases, which costs millions, will be met with the potential for reward. This will ensure that patients can benefit from cutting-edge advancements without delay. As the hon. Member for Strangford said, short-term investment in research and treatment for rare retinal diseases will deliver long-term financial benefits, to the tune of £600 million. It will also reduce lifelong healthcare costs and empower patients to live independent, productive lives.

The eyes are indeed the window of the soul, but they are also the window to our health. So many health conditions are detected in the eyes, and rare retinal conditions can lead to the early detection of other health conditions, such as Behçet’s disease and so many others. We are thankfully on the brink of transformative breakthroughs. Gene therapies such as Luxturna, which is a virus vector-based medication, along with AI-driven early detection and advancements in stem cell research, offer real hope. By supporting those innovations with funding and adaptable regulations, we can bring life-changing treatments to those who need them most.

This is about not just heath but equity and humanity. Without action, we will condemn families to live in the shadow of irreversible loss, because if a person has sight loss, it affects the whole family. With action, we can rewrite their stories and give them hope and vision. Let us act now for that mother, that young boy and the thousands like them. Sight is not a privilege: it is a right.

--- Later in debate ---

[Shockat Adam]

The right hon. Member should not feel bad, as that is the most common reason for eye trauma—gardening is the most dangerous sport for eye health. I have met people who lost their sight from a branch scratching their cornea.

[Edward Argar]

In which case, I remain very grateful to the clinicians at the Leicester royal infirmary. The hon. Member will be pleased to know that my wife shares his view about the dangers of gardening, particularly when I am doing it.

As right hon. and hon. Members can see, I am increasingly reliant on my reading glasses and my regular eye tests at Specsavers—other opticians are available. As the hon. Member for Strangford said, that is a reminder of the importance of the issue. A regular eye test not only can detect optical and retinal illnesses earlier, but can potentially spot other more serious conditions that are not directly related to eye health, but of very great significance.

[Edward Argar]

The hon. Gentleman is absolutely right. He and I have known each other since we came to this House, and he has read my mind, because I was about to say that there are examples of life-threatening tumours being detected through a regular eye test and a referral onwards, which has saved people’s lives. As he set out, an estimated 25,000 or so people in the UK are affected by inherited retinal diseases. As the hon. Member for Leicester South said, the most common, which I will mispronounce, is retinitis—

[Shockat Adam]

Pigmentosa.

[Edward Argar]

I am grateful to the hon. Gentleman. As a professional optometrist, I am sure his bill will be in the post. Inherited retinal diseases can lead to a gradual loss of vision and can have potentially devastating effects.

Hospice and Palliative Care

Shockat Adam Excerpts

Monday 13th January 2025 Commons Chamber

[Shockat Adam (Leicester South) (Ind)]

Palliative and end of life care is about dignity, compassion, and giving every person their right to live their final days in comfort and peace, as the hon. Member for Wimbledon (Mr Kohler) observed when compassionately describing his parents’ last moments. However, I agree wholeheartedly with the hon. Member for Stoke-on-Trent South (Dr Gardner) that access to high-quality care is a postcode lottery across the UK. Only a third of local NHS areas in England can provide 24/7 end of life care at home, which leaves nearly 100,000 people every year without the care and support that they deserve during their most vulnerable moments.

We must address this disparity. Every patient deserves a personalised care plan that respects their wishes and supports their physical, emotional, social and spiritual needs. Care plans should also offer non-clinical help, such as financial advice and opportunities for people to participate in meaningful activities while they can still do so; and let us not forget the families who require respite care during this period.

Hospices play a vital role in such care, but, unlike the NHS, hospice care is not fully funded by the Government. Hospices receive only about a third of their income from the state; the rest is raised through charitable donations, which is pitiful. This model is unsustainable. As a result of rising costs, which have not been helped by the national insurance increases, the sector faces a £60 million deficit this year alone. As demand for hospice care grows owing to an ageing population and advances in medicine that help children with life-limiting conditions to live longer, the strain on hospices will only increase. Without immediate action they will struggle to meet this growing demand, leaving more people without the care that they deserve.

We need bold and decisive steps to fix that. First, we need fair and sustainable funding. The Government must create a national plan to secure consistent funding for hospices. Emergency funding is urgently needed. Secondly, we need a national standard for care. National quality standards and agreed outcomes for palliative and end of life care are essential. Every integrated care board must meet minimum standards to provide fair access to care nationwide. Thirdly, we need support for underserved communities in areas where people are currently missing out. There should be access to palliative care in homes, care facilities and hospitals, ensuring that no one is left behind. Fourthly, the £26 million children’s hospice grant must be ringfenced.

Let me end by thanking the incredible teams at the two hospices in my city that serve my constituency: LOROS, which assists 2,500 people a year, and Rainbows, a fabulous organisation that cares for young people with life-limiting conditions. I want to thank them both.

Access to Primary Healthcare

Shockat Adam Excerpts

Wednesday 16th October 2024 Commons Chamber

[Helen Morgan]

My hon. Friend is entirely right. I believe that the Government are taking steps to address that, but he has made an important point about the need for flexible GP funding. A general practice may have money to spend on professionals and need more fully qualified doctors to deal with its patient list, but can only spend that money on another pharmacist or another nurse. That is a ridiculous situation, and I am pleased that the Government are dealing with it.

[Shockat Adam (Leicester South) (Ind)]

Will the hon. Lady give way?

[Helen Morgan]

No, I will make some progress.

People do much better if they have access to continuity of care, but 8,000 more GPs are needed to deliver the rights that we laid out in our manifesto. We do not shy away from the fact that that is an ambitious objective, and we accept that it cannot be achieved through training and recruitment alone: we need to retain and incentivise our existing workforce. As I said earlier, seeing people in their communities avoids hospital admissions and saves money. Unfortunately, although the Conservatives promised us 6,000 more GPs in 2019, we ended up with 500 fewer. That is why people are so frustrated. According to the findings of research carried out by the House of Commons Library, GP funding has fallen by £350 million in real terms since 2019. As a result, not only are people struggling to gain access to basic care in their communities, but there is a postcode lottery when it comes to availability of that care.

In the area where I live, which is covered by NHS Shropshire, Telford and Wrekin, the number of fully qualified GPs fell from 280 in 2016 to 242 in 2023, despite an increased and increasingly ageing population with a much higher level of demand, while 43% of patients are waiting more than 28 days for non-urgent appointments. The Darzi report showed that the number of people waiting for long periods for appointments is rising throughout the country: it is a national issue. We know that from our own doorstep conversations.

Members might ask me, “Where are you going to get 8,000 more GPs from? That is a big number.” Apart from training new ones, we should value greatly our experienced ones. A recruitment and training programme is one idea, and, as my hon. Friend the Member for Westmorland and Lonsdale (Tim Farron) pointed out, using the dentists we have trained properly is extremely important, but we also need to focus on retention and incentivising our existing GPs, to ensure that we hold on to valuable experience and valuable patient continuity.

Let me move on from GPs to local pharmacies. Pharmacy First was a great idea of the previous Government —I am willing to give them credit—but pharmacists are under huge strain. According to the Darzi report, some 1,200 have closed since 2017, and spending under the community contract has fallen. Tomorrow I am going to visit Green End pharmacy in Whitchurch, in my constituency, which wrote to me:

“As an independent pharmacy, we’re unable to keep on absorbing costs with losses on dispensing.”

The pharmacy is struggling because it is making losses on the drugs that it gives out on prescription. Given that it is a small, independent pharmacy, it does not have a massive shop from which to make profits to subside that work.

In 2023, Community Pharmacy England warned of

“systemic pharmacy funding cuts of at least 25% in real terms since 2015.”

That has led to a postcode lottery of access, and to many pharmacies being unable to have a full-time pharmacist and relying on locums, which has led to a really poor and insecure level of service. That is impacting on people who just need to go and pick up their prescription and get on with their day.

--- Later in debate ---

[Helen Morgan]

I will make some progress now, if that is okay, because I am conscious that lots of people want to get in and make full speeches.

We have called for a guarantee for urgent and emergency dental care. Check-ups for those people who are already eligible and those needing check-ups before things such as chemotherapy and surgery were also in our manifesto. It is only going to be possible to offer those guarantees if we deal with the issues in the dental contract and the flexibility of commissioning.

Primary care is the front door to the NHS, as I mentioned at the beginning, and Lord Darzi pointed out in his report that that is where we should be investing. At the moment, money is flowing to secondary care—to hospitals—yet most people’s experience of the NHS is with their doctor or dentist. We must ensure that that first point of call is a good point of call, and reduce the numbers of people going to A&E. That is so much more cost-effective, but it is also so much better for those people who could manage their health condition without a crisis and without ever having to go near a hospital.

We should also think of the knock-on impacts on those hospitals. We all have horror stories of ambulances queued up outside hospitals because so many people are in A&E and so few people can flow through the hospital. The issues around that are complex, and they link in to social care as well, but the reality is that if we can treat people in the community, we will save the lives of people who need emergency care. This is absolutely fundamental: we need investment in our GPs and in dental and pharmacy contracts because we cannot afford not to do it.

[Shockat Adam]

In addition to pharmacists and dentists, I would like to mention my profession. Optometrists can really play a role in reducing the strain on primary and secondary care.

[Helen Morgan]

I thank the hon. Gentleman for his intervention. That is an important point and I apologise for not making it in my speech. Optometry is really important, and as somebody who spends their whole life looking for their other glasses, I can absolutely appreciate his point.