Prescription Charges: Long-term Health Conditions — [Dame Maria Miller in the Chair]

– in Westminster Hall at on 11 March 2024.

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[Relevant documents: e-petition 633794, Free prescriptions for all cystic fibrosis (CF) patients; e-petition 622971, Include Sickle Cell Anemia in the List of Illnesses Eligible for a MedEx Card; e-petition 621375, Allow those diagnosed with Crohn’s and Colitis to access Medical Exemption card; e-petition 588355, Add Sickle Cell to the Prescription Charge Exemption List; e-petition 333926, Include Sickle Cell Anemia in the List of Illnesses Eligible for a MedEx Card; e-petition 328047, Add Crohn’s & Colitis to the Medically Exempt Certificate; e-petition 326574, Make prescriptions free for everyone with Cystic Fibrosis.]

Photo of Christina Rees Christina Rees Independent, Neath 4:30, 11 March 2024

I beg to move,

That this House
has considered e-petition 608237 relating to prescription charges for people with chronic or long-term health conditions.

It is always a pleasure to serve under your chairpersonship, Dame Maria. I am honoured to deputise for my hon. Friend Tonia Antoniazzi by reciting her excellent speech to open the debate. She was scheduled to move the motion on behalf of the Petitions Committee, but has duties elsewhere. To use a rugby analogy, as my hon. Friend is a rugby player, I have come off the substitutes bench to replace her. But that is all I will say about rugby, having spent the train journey to Paddington this morning with lots of very happy French rugby fans who got on the train at Cardiff still celebrating their victory over my beloved Wales yesterday.

On 6 March last year, my hon. Friend the Member for Gower opened a debate on e-petition 594390, relating to prescription charges for people aged 60 or over. Many of the issues covered then are also applicable in this debate. I pay tribute to Mia, the petition’s creator, who spoke to the Committee recently about her motivations behind starting it. Only in her 20s, Mia is already feeling the impact of prescription charges for the medication that she needs to alleviate the symptoms of her multiple sclerosis. Having been diagnosed so young, and with the situation as it currently is, she faces paying for her medication for decades.

Following her diagnosis, Mia has become part of an extensive online community of people with long-term and chronic health conditions. The common feeling of exasperation at paying for medication inspired her to create the petition. Based on the conversations she has had, Mia listed in her petition a number of conditions that are not exempt from prescription charges, including MS, endometriosis, inflammatory bowel disease, postural orthostatic tachycardia syndrome, depression, anxiety and Ehlers-Danlos syndrome. Other conditions that are not exempt and have been the subject of their own e-petitions include cystic fibrosis, sickle cell anaemia, Crohn’s and colitis, along with—this is not a specific condition but a group of people—those who have undergone organ transplantation.

For many of the conditions included in Mia’s non-exhaustive list, there is no gold-standard medication that alleviates symptoms completely. Mia spoke to me about having to try new medications, often knowing full well that they may not work but still having to pay for the pleasure. Perhaps to rub salt in the wound, Mia was told that a potential side effect of her chemotherapy treatment for MS could be that she developed hyperthyroidism. Should that happen, the hyperthyroidism would make her exempt from prescription charges.

I also thank Dan, who the Committee spoke to about his petition on behalf of organ transplant patients. Dan had a liver transplant after having relied on medication since the age of 13 and spent years paying for the medication that kept him alive. Now, he has to take medication to prevent his body from rejecting the new liver and allow him to go back to work, and he still faces paying for prescriptions.

The crux of the issue lies in the criteria for the medical exemption certificate. I find it astonishing that the list of exempt conditions has not been reviewed since 1968, apart from the inclusion of cancer patients in 2009. Treatments have come on in leaps and bounds since the 1960s, as has our knowledge of medical conditions that were once unknown or not spoken about. That the exemption list has not moved with the times is frankly baffling.

The question that came up time and again in conversations about the petition was, “Why were the conditions on the exemption list chosen over others?” That is not to say that the conditions on the list do not belong there, and nobody the Committee spoke to suggested that x condition deserved to be there over y condition; rather, it is to ask on what basis conditions were chosen for the list. What was the evidence for inclusion and for exclusion? I would really appreciate any light that the Minister can shed on that.

Perhaps the list was based on survivability, which has, thanks to decades of improved research, improved by leaps and bounds. To give an example, in 1968 children with cystic fibrosis were not expected to live into adulthood. With medication and physiotherapy, the prognosis now is much different from what it was nearly 60 years ago. However, cystic fibrosis remains life-threatening, and those living with it still face having to pay for the medication that keeps them alive. Over the decades, research has improved our understanding of chronic and long-term health conditions and in turn improved the length and quality of life for so many people. Surely it is only right that the exemption list grows with this knowledge.

The UK Government need to rethink their approach to prescription charges, because their consequences can be dire. Recently, Donna Smitheman has been campaigning for free asthma inhalers, following the tragic death of her 25-year-old son Jordan. Jordan was not able to afford his inhalers, and questioned why he had to, given that he had not asked to have asthma. Donna has taken action because she believes that access to life-saving medication such as inhalers should be a right and not a privilege.

Research published in 2023 by the Prescription Charges Coalition found that almost one in 10 respondents had skipped their medication as a result of the cost. As a result, 30% of those people said that they now suffer with other physical health problems. The Committee spoke to Lindsey Fairbrother, a pharmacist who had conversations with people who were not taking the medication they needed because of its cost. A similar observation was made by Ellen Schafheutle, who has done qualitative research into the subject. She said that her one wish for this debate was that we stress the negative impact of people forgoing medicine because of the cost.

Photo of Lilian Greenwood Lilian Greenwood Shadow Minister (Culture, Media and Sport)

My hon. Friend is doing a great job of setting out some of the challenges that people with long-term conditions face. Does she share my concern that this situation has a damaging impact not only on people’s health—she rightly says that people have a right to receive prescriptions and improve their health—but potentially on the national health service, because if people skip their medication because they cannot afford it, they will end up making more trips to a GP or to accident and emergency, and potentially have more hospital stays, which would be extremely expensive for the health service and would, of course, have a damaging impact on them and their families?

Photo of Christina Rees Christina Rees Independent, Neath

I thank my hon. Friend for her important intervention. I completely agree with her and will come to that issue later in my speech. I will pass on her support to my hon. Friend the Member for Gower, who I am sure will appreciate it. The UK Government have stated that the revenue raised from prescription charges goes back into the NHS. However, given the cost of enforcing the list of exemptions, as well as the longer-term financial impact on the NHS of people forgoing medication, that argument seems to be a false economy.

Parkinson’s UK has long campaigned for a change to prescription charges for the people it represents, and research published in 2018 found that scrapping the charge for people living with Parkinson’s would save the NHS money. The UK Government’s written response to the petition stated that those with long-term conditions could save money by utilising the prescription prepayment certificate. Although that is a good option for many, it is still too much for some in a cost of living crisis when people are living pay cheque to pay cheque.

We should not forget that it is somewhat of a postcode lottery, as England is the only UK nation where prescriptions are not free. When the Welsh Government abolished prescription charges in 2007, they cited evidence that some people with serious chronic conditions could not afford their prescriptions and were choosing to have only part of them dispensed to reduce the cost. It was seen as a long-term investment in people’s health, with the added bonus of being cost-effective because it prevented further complications arising from people not taking vital medications, which would increase costs to the NHS.

According to the Government, 95% of items dispensed in 2023 were exempt from prescription charges, but that proportion is entirely useless given that exemptions do not apply to medicines. It tells us absolutely nothing about who is exempt. Perhaps the Minister could enlighten us with some statistics on that. Mia stated that although the UK Government’s response did not surprise her, she was still gutted by it. She did not feel that it answered any of her concerns, and I must agree with her.

Of course, if we lived in an ideal world, England would catch up with Northern Ireland, Scotland and Wales. Exemption lists are inherently unfair. Expanding the medical exemption list is not a perfect solution to the cost of prescriptions, but we need to start somewhere. I urge the Minister and the UK Government to listen to the thousands who have signed petitions relating to prescription charges. The NHS is under immense pressure, but people’s lives are truly on the line. I give you my sincere thanks, Dame Maria, on behalf of my hon. Friend the Member for Gower.

Photo of Preet Kaur Gill Preet Kaur Gill Shadow Minister (Primary Care and Public Health) 4:43, 11 March 2024

It is a pleasure to serve under your chairship, Dame Maria. I thank my hon. Friend Christina Rees for opening the debate, and for sharing Mia’s story and her reasons for creating the petition. I thank Mia for doing so, and I pay tribute to the more than 20,000 people who signed the petition to bring this issue to Parliament. I hope that my remarks do justice to this important subject.

As we know from the Budget debates this week, this Parliament is set to be the first in modern history in which living standards have dropped over its course. Faced with a crippling cost of living crisis since the Government tanked the economy and sent prices soaring, people are having to make impossible choices that they never would have dreamed of making in the past—between eating or heating their homes, between paying their rent or going into debt, or, for people with chronic conditions, between paying for their medicines or forgoing other essentials. It is a shocking situation that far too many people in this country find themselves in.

We all understand the immense challenges faced by people with chronic or long-term conditions. That is part of why the next Labour Government have made it our mission to reform health and care services to build an NHS fit for the future by improving capacity and providing it with the staff, technology and resources it needs so that all patients get the treatment they need where and when they need it. We will deliver 2 million more NHS appointments a year, and reform primary care so that people with long-term conditions can request face-to-face appointments with a doctor of their choice, meaning better continuity of care and better outcomes for patients.

Whether it is the debilitating pain faced by many people with endometriosis, Ehlers-Danlos syndrome or polycystic ovary syndrome, the struggle of living with chronic anxiety or depression, or the fatigue and disabilities associated with conditions such as multiple sclerosis or POTS, I cannot do justice, in the time I have, to the many daily hurdles that many people living with such conditions face, but being able to afford essential medications should clearly not be one of them. I thank my hon. Friend the Member for Neath for sharing some people’s stories today.

I recognise that the cost of prescriptions in England, which is currently £9.65 per item, is a burden on many people living with chronic conditions that are not on the medical exemption list. I acknowledge the Government’s argument that the prescription prepayment certificate scheme can reduce the outlay, and that there are a number of exemptions from paying for prescriptions for certain demographics, including those on low incomes. However, paying up to £111.60 a year for medication is a heavy outlay for many ordinary people during a cost of living crisis, and the issue of fairness in how different conditions are treated remains.

When the medical exemptions list was first drawn up in 1968, it was limited to readily identifiable permanent medical conditions that automatically called for continuous, lifelong, and, in most cases, replacement therapy, without which the patient would have become seriously ill or even died. There has been only one review since then, under the last Labour Government, when cancer was rightly added to the list. Many Members and our constituents have criticised the medical exemptions list as being out of date, inconsistent and arbitrary, based on patterns of illness and treatment that have changed significantly since the 1960s.

Previously, when this issue was debated in relation to exemptions for cystic fibrosis, the then Minister, Edward Argar, stated:

“We do think it would not be right in this context to look at one condition in isolation, separate from other conditions, because others would rightly argue that their condition was potentially equally deserving of an exemption if it fitted the same criteria.”—[Official Report, 2 February 2022;
Vol. 708, c. 185WH.]

As the petition focuses on a range of conditions, will the Minister say whether the Government see a case for looking again at the medical exemptions list now?

Will the Minister also tell us what she knows about the take-up of the prepayment certificate, and whether its price is a barrier to some people getting the medication they need? What assessments have the Government made of how the addition of cancer to the medical exemptions list improved outcomes for people with cancer? Does the Minister agree that no one suffering from debilitating chronic illness should be priced out of the medication that they need?

At a time when the cost of living is continuing to rise, the Government should consider what more they can do to support people with these essential costs. Applications to the NHS low-income scheme have surged on the Government’s watch, up from just over 267,000 in 2021 to 361,000 in 2022—a 35% rise in a year. That surely reflects the scale of the problem.

It is appalling that people have been rationing their own medication simply because of cost. It is not just a matter of fairness; skipping medication risks costing the NHS more money in the long term and putting even more pressure on primary care if that person’s health deteriorates. Indeed, last year, when looking at the impact of potentially increasing prescription charges, the Government’s own impact assessment raised several concerns, including that some people towards the lower end of the income distribution may struggle to afford all of their prescriptions, which can result in future health problems for the individual and subsequent cost to the NHS. That is worrying. What estimate has the Minister made of the number of people in England who are currently unable to afford medicine, and what assessment has she made of the knock-on impact on NHS services, which are already at breaking point? Research published by York Health Economics Consortium in 2018 found that removing prescription charges for IBD and Parkinson’s alone could save the NHS up to £20 million a year. What assessment has the Minister made of the economic case for looking at this again?

Labour recognises that the cost of prescriptions in England, currently £9.65 per item, is a burden on many people living with chronic conditions. Prescription charges have risen 34% under this Government, and with costs continuing to rise, there are valid concerns about people being priced out of accessing vital medicines. While I recognise that there is a broad system of exemptions from charges, including for those on low incomes, I hope the Minister has heard the concerns raised and the representations made by the petitioners. No one should be forced to choose between paying for their prescription and risking their health.

Photo of Andrea Leadsom Andrea Leadsom The Parliamentary Under-Secretary for Health and Social Care 4:50, 11 March 2024

It is a pleasure to serve under your chairmanship, Dame Maria. I am grateful to Christina Rees and the many members of the British public for raising the important issues covered in the e-petitions. I pay tribute to all members of the public who have written in with their stories. I shall set out exactly what the Government’s thinking is and what measures are in place to support people with the cost of prescription charges.

Every single one of us has constituents with long-term and chronic conditions who are suffering from financial hardship. I have a number in my own constituency of South Northamptonshire, and I have helped many get the financial support to which they are entitled. The Government are fully aware that the rise in the cost of living has been particularly severe for people who are unable to work or who have had to reduce their hours. Long-term and chronic conditions affect a person’s career opportunities and put them at a higher risk of becoming reliant on benefits to meet their basic needs.

The prescription charge, currently set at £9.65, applies to each item on a prescription form and is reviewed annually. This charge has no link to the cost of a prescribed drug or appliance, or to any of the costs associated with distribution or the dispensing service. Let me set out the extent of the exemption arrangements that are in place to provide people with free prescriptions or to limit their cost.

Eligibility for free prescriptions falls principally into three broad categories: age, income and medical condition. Some of these also provide exemption from other NHS charges, such as for dental treatment. The age-related exemptions cover all children under 16, teenagers between 16 and 18 in full-time education and all those aged 60 and over. The income-based exemptions are for those on a low income. Most are based on receipt of certain benefits, including universal credit. Help is also available through the NHS low income scheme.

With a medical exemption certificate, exemptions apply to people with medical conditions such as epilepsy, certain types of diabetes and cancer. The certificate is valid for a period of five years, exempting patients from paying for any of their prescriptions. In addition, prescriptions are also free for pregnant women and new mums with a maternity exemption certificate. As a result of all the exemptions available, 89% of all prescription items are dispensed free of charge. In addition to exemptions, we also have provisions in place to cap the total cost of prescriptions to any individual.

Our approach to exemptions is that it is not right to look at specific conditions in isolation. Someone might well consider, as has been put forward today, that their condition is particularly deserving of an exemption and that it should be added to the list of exemptions. I do have the utmost sympathy for anyone who needs regular or extensive medication, so while I must advise colleagues that the Government have no plans to extend the list of conditions that confer exemptions at this time, I do want to address some of the concerns raised by colleagues about affordability.

When the medical exemptions list was introduced, it meant that around 42% of all NHS prescription items were dispensed free of charge. Now the figure has risen to around 89% of all prescription items, and around 60% of people in England do not pay any prescription charges at all. Many people with medical conditions who are not on the list may already get free prescriptions on other grounds, because current exemptions already provide help for those on lower incomes and the most vulnerable in society. So while not everyone qualifies for free NHS prescriptions, support is available to ensure their affordability for those with greater need. Those who do pay charges are entitled to a 12-month prescription prepayment certificate, no matter how many prescriptions they need. That fixes prescription costs at £111.60 a year currently, or just over £2 a week. A prescription prepayment certificate can also be purchased to cap the cost of prescriptions for a three-month period at a cost of £31.25.

It is really important that all our constituents understand that. As Minister for Primary Care and Public Health, I get letters from people saying that their prescription costs are high and recurring, and I want people to understand that the prepayment certificate caps that cost at—I will say it again—£111.60 a year, or just over £2 a week. That annual certificate can be purchased by monthly instalments, which means that a person can have all the prescribed items they need for just over £2 a week, providing real help for someone with a long-term or chronic condition.

The NHS low income scheme provides help with prescription charges and full or partial help with other health costs. It is designed to help those on a low income who do not receive benefits that qualify them for exemption from prescription charges. As colleagues would expect, it is means-tested by comparing a person’s income with their requirements.

There is no doubt that long-term conditions place huge stresses and strains on our constituents and their loved ones. People are living longer, which is a wonderful thing, but the truth is that those extra years are not always enjoyed in good health. In England, around 26 million people have a long-term health condition that cannot be cured, but can be controlled with medication or other therapies. Some 10 million have two or more long-term conditions, and their number is expected to increase in the coming years. Caring for people with long-term conditions already accounts for over two thirds of the money we spend on health and social care in England, which was nearly £206 billion in total in 2022-23.

Long-term conditions can also mean reduced mobility, chronic pain, shrinking social networks and worse mental wellbeing. People with multiple conditions in particular are more likely to have poorer health, poorer quality of life and a higher risk of dying early. That is why we are carefully considering how to improve their outcomes in our major conditions strategy. The strategy will focus on tackling the six major conditions groups that account for 60% of ill health and early death in England: cancers, mental ill health, cardiovascular disease including stroke and diabetes, dementia, chronic respiratory diseases, and musculoskeletal disorders. We are determined to ensure that care is better centred around the patient, with more focus on prevention and a holistic approach to support.

Turning to some other ways in which the Government are providing support, we are backing people with health conditions who want to work to do so. We remain committed to bringing down the employment gap for people with long-term conditions, and we continue to support those people to start, stay and succeed in work. That is why we are increasing work coach support in job centres for people with health conditions receiving universal credit or employment support, and boosting the number of specially trained advisors in job centres offering advice and expertise.

Once we have helped people into work, our Disability Confident scheme encourages employers to think differently about health and disability and take action to address issues that employees face. We are also providing access to work grants towards the cost of working beyond standard reasonable adjustments. We do not want anybody with long-term conditions, whether one or several, to feel, “That’s it. I’m in long-term terminal decline.” We want to help people to feel that they have a future and that we can help them to get support back into the workplace to make something more of their life and to start enjoying it again.

To help with energy costs, the energy bills support scheme delivers a £400 Government discount in instalments over six months, helping no fewer than 29 million households with energy bills over winter. The energy price guarantee has been extended to April 2024, reducing typical annual household bills in Great Britain by about £3,000.

Colleagues pointed to the abolition of prescription charges in the devolved Governments. Health is a devolved matter and the devolved Administrations have full discretion in how they spend their budgets, but looking at health in Labour-run Wales or the outcomes for the Scottish National party-run health service in Scotland, I am glad that this Government in England make the right decision to require those who are better off to contribute to vital NHS services in England. In 2022-23, those contributions gave about £670 million in revenue to England’s NHS—a sum equivalent to the cost of employing about 12,500 full-time nurses and health visitors for a year in 2022-23. That income helps our NHS to maintain vital and much needed services for all patients.

Personally, I support continuing to require better-off patients to contribute to their own prescription charges, while recognising that 89% of all prescription charges are no longer payable. Furthermore, we provide support to those with multiple conditions, making that affordable for them.

I thank colleagues for participating in this debate, which touches on so many of our constituents, their families, friends and carers up and down the country. I assure all colleagues and our constituents that every penny we get from prescription charges is reinvested into our NHS. We will always keep support in place for those who need it the most.

Photo of Christina Rees Christina Rees Independent, Neath 5:01, 11 March 2024

On behalf of my hon. Friend Tonia Antoniazzi, I thank my hon. Friend Lilian Greenwood for her important intervention; my hon. Friend Preet Kaur Gill, the spokesperson for the official Opposition; and the Minister. I am sure that my hon. Friend the Member for Gower will read the debate in Hansard with great interest. Finally, I thank you, Dame Maria.

Question put and agreed to.

Resolved,

That this House
has considered e-petition 608237 relating to prescription charges for people with chronic or long-term health conditions.

Sitting adjourned.