Lea was diagnosed with a rare kidney condition called IgA nephropathy when she was 10. She has had two kidney transplants; the first lasted seven years, and the second five years.  

Between her transplants, Lea had haemodialysis treatment for her kidney failure. During this time, she received free prescriptions.  
  
However, after her second transplant failed, Lea started peritoneal dialysis, a different treatment, and had issues with her prescription charges as a result.  
  
Lea shares the struggles she has had with prescription charges and explains what she would like to be done differently. To read Lea’s full story, head to Kidney Care UK.  
  
“I never had an issue with getting free prescriptions at any point when I was on haemodialysis (HD) or when I was post-transplantation, but when I started peritoneal dialysis (PD), I was told I was no longer exempt from paying for my medications.  
  
“To get free prescriptions, you have to fill and sign a medical exemption certificate and then give that to the GP to co-sign. When I started PD in February 2024, I still had a previous medical exemption certificate, but it ran out in October 2024. So, I got a new form from my GP surgery and filled it out. 
  
“On the form, it explains that you are entitled to a medical exemption certificate if you have a “fistula which needs continuous dressing or an appliance”. I figured that I need to sterilise and clean my PD tube every other day, so I ticked that section. A few days later I was told that my GP had refused to sign it off. 
  
“I was in total shock, and I started panicking when I was denied the exemption. My GP didn’t even talk to me about it, it was all done through the receptionist. I explained to the receptionist why I thought I should be exempt, but I was just told that I wasn’t eligible. They said that because all the equipment I need for PD is provided through hospital, that it wasn’t anything to do with the GP surgery and they suggested I ask the hospital to co-sign. I felt like I was just left on my own to figure it out.  
  
“I rang my PD team, and they told me that they were happy to sign the form. It was a relief, but I was angry that I had been messed around.  I got the impression from my kidney team that is a regular occurrence for people with PD. Thankfully, I managed to get it sorted before I had to start paying for my prescriptions. 
  
“My GP never contacted me to explain why they wouldn’t sign the form. I think that if he had spoken to me, he would have seen my point of view. I wonder if he even knows what having PD treatment means.  
  
“I think it’s crazy that my GP decided that receiving haemodialysis means I was exempt from paying for prescriptions, but having peritoneal dialysis didn't. That is what I find unfair. With PD I have a tube in me all the time, I am more at risk of infection, I have to sterile clean around the tube. Why would I not be entitled to a medical exemption from paying prescription charges? 
  
“I’d like PD to be recognised as being worthy of exemption by everyone. A lot of people just accept what their health professional says but I wasn’t going to stand for it. I can’t understand why my GP said that my PD treatment wasn’t covered when it is keeping me alive. If I didn’t do dialysis, PD or HD, that would be the end of me.”

With your help we can win the fight to secure an exemption from prescription charges for everyone living with a long-term condition in England.

Last year we invited all English Members of Parliament (MPs) to attend a briefing in Parliament, so they could speak to people who are impacted by the charge.

Ask to meet your MP
We now need to get the message out to every MP we can across England, so we're encouraging anyone living with a long-term condition to speak to your MP.

Through lobbying your MP, you have the power to make real change.

Our guide will tell you everything you need to know about effectively engaging your MP on prescription charges.

Laura Cockram, Chair of the Coalition and Head of Campaigns at Parkinson's UK commented:
"MPs really respond to an individual's personal experiences, which is why it's so important that as many people as possible ask to meet their MP. The guide we've produced shares information, stats and tools you'll need to make a meeting with your MP successful. The vital ingredient is your personal experience though!
​
"We'd love to end the year with as many of the 543 English MPs understanding the impact of the charge on those living with long-term conditions and vowing to take action to support our campaign. And don't forget to let us know how the meeting with your MP goes."

To ask any questions or share your experience please email the Coalition. 

Several people with long-term conditions (cystic fibrosis, kidney disease, Parkinson's and Sickle Cell), charity representatives, a community pharmacist and John from the Royal Pharmaceutical Society briefed MPs in Parliament about the impact of prescription charges.

Coalition members and hundreds of supporters invited their MPs to attend the briefing so they could understand why the charge is a barrier to them staying well. We were particularly keen to connect with new MPs following the election

Candice, Helen, Jacqueline and Nick who all live with long-term conditions spoke to MPs from across England to share: 

• how unfair the current system is
• their own experiences with prescription charges and 
• ways MPs can take action in Parliament to support our campaign. 

Sharing their personal experience
Helen Groves, a retired Pharmacist who lives with Parkinson’s attended the event to discuss her concerns with MPs. 
Helen said: "Having worked as a pharmacist, I saw firsthand how prescription costs impacted people’s lives. Now, living with Parkinson’s and managing a complex daily medication routine myself, I feel even more strongly about the need for change. Attending this event has been a valuable opportunity to highlight the challenges faced by those with long-term conditions like Parkinson’s. It’s crucial that these voices are heard to ensure people have access to the medications they rely on.”

We asked MPs to work with us to raise the profile of prescription charges in Parliament. We're campaigning for:

• the charge to be frozen for 2025
• a review of the prescription charge exemption list

Next steps
We'll be following up with MPs who attended and will be encouraging them to ask questions in Parliament and write to the health Minister about prescription charges. And in the new year we'll be producing a lobbying pack for supporters so they can speak to their MPs.

In the meantime feel free to email the Coalition if you've got any questions or would like to connect with your MP. 

Prescription Charges Coalition members have written to the leaders of the Conservative and Labour parties ahead of the election urging them to commit to reviewing the exemption list.
Lib Dem commitment
​On Monday (10 June) the Liberal Democrats committed to reviewing the exemption list if elected in their manifesto.
Coalition letter
The letter, that was signed by over 20 members of the Coalition sets out the case for the new government to review the outdated and unfair exemption list - that sees people with asthma, sickle cell, HIV, Cystic Fibrosis, Parkinson's, Crohn's and Colitis, heart, lung and kidney disease pa for their vital medication to keep them alive and well.
We'll post any responses we receive!
Doorstep chat with your candidate
In the meantime if an election candidate knocks on your door why don't you ask them:

• Whether their party will commit to review the prescription exemption list?
• What action their party will take to ensure people with long-term conditions get the medicines they need to stay healthy and well? 

If your candidate does respond to your questions, please let us know:

• which constituency you live in
• which party the candidate was from
• what the candidate said.

​You can email us on [email protected]              

We strongly oppose the rise in the NHS prescription charge, which comes into effect in England today (1 May). And our comments have been widely picked up across the media in the Telegraph, Metro and Daily Mail.

A single prescription item will now cost £9.90, a rise of 25 pence, and prescription prepayment certificates (PPC) will now cost £114.50 annually.

Working age people who live with long-term conditions like Parkinson’s, asthma, multiple sclerosis, HIV and mental health conditions are not exempt from prescription charges in England. Prescriptions are free in Scotland, Wales and Northern Ireland. 

The Prescription Charges Coalition, is campaigning for the charge to be reviewed and scrapped. We have  major concerns that people will be forced to skip their medication and rely on NHS services more because of the spiralling costs. 

Wendy, who lives with Parkinson’s, said:
“The prescription price rise is just another nail in the coffin for people living with Parkinson’s. The way prices keep going up, I don’t know how much longer I can last.”

Professional bodies share their support
Professional bodies, trade associations and unions in the health and pharmaceutical sector have published a joint statement to show their support of the Coalition and call on the government to urgently review the exemption list..
The National Pharmacy Association, the Pharmacists’ Defence Association, the Royal College of GPs and the Royal Pharmaceutical Society support the call for the UK government to review the outdated prescription exemption system and scrap prescription charges for people living with long-term conditions in England. This will bring England in line with other-UK countries.

We already know the increased costs of prescription charges are forcing some people to skip their medication.
The charge is a financial barrier to good health and well being as it can result in people taking time off work and contributing to society. This also puts further strain on an already overstretched NHS, with people relying more on health services like GP consults and A&E visits if they can’t afford their prescription medicine.

The exemption list has remained relatively unchanged for the last 50 years and neglects to include many life-altering conditions such as Parkinson’s, Multiple Sclerosis, Arthritis, Cystic Fibrosis and Asthma. People living with these conditions often have to take multiple medications a day and without the full dose, it is difficult for them to lead healthy and fulfilling lives.

That is why, as a first step, we are calling for an urgent review of the outdated exemption list as it is unfit for purpose for those living with long-term conditions, especially for those of working age.

Laura Cockram, Head of Campaigns at Parkinson’s UK and chair of the Coalition, said:
"The NHS prescription charge price increase has struck fear into people living with long-term health conditions, such as Parkinson's. People are already struggling financially due to the cost of living crisis, and increasing the cost of prescriptions will result in more people missing, reducing, or delaying taking their medication, meaning their condition will deteriorate."

"Recent research from the Royal Pharmaceutical Society and the Pharmacists' Defence Association revealed that more than a third of pharmacists (35%) have seen an increase in patients declining prescriptions in the last 12 months. This will only lead to a greater cost to health and social services and avoidable hospital admissions."
​
"People living with Parkinson's and other long-term conditions rely on multiple prescriptions to manage their symptoms, and the UK government is only putting more barriers in place to stop them from doing so. There is limited financial support that charities can offer to offset government shortcomings. That’s why we're calling on the UK government to freeze the charge in 2025 and commit to urgently reviewing the prescription charge exemption list."

​Next steps
The Coalition will continue campaigning to urge the government to review the exemption list so that people with long-term conditions can get the medicine they need to stay alive and well.

Prescription charges set to rise from 1 May 2024
​
The Department for Health and Social Care has announced that NHS prescription charges in England will rise by 2.59% next month. 

From 1 May 2024, people in England will have to pay:

• £9.90 per single prescription item
• £32.05 for a 3 month Prescription Prepayment Certificate
• £114.50 for a 12 month Prescription Prepayment Certificate
• £19.80 for the new hormone replacement therapy Prescription Prepayment Certificate that was introduced last year

NHS surgical bras, abdominal or spinal supports are also set to rise. You can read more about the planned rise on the government’s website. 

These changes won’t affect prescriptions dispensed in April 2024.

Laura Cockram, Head of Campaigns at Parkinson's UK and Chair of the Prescription Charges Coalition, said:
"The NHS prescription charge price increase will strike fear into people living with long-term health conditions, such as Parkinson's. People are already struggling financially due to the cost of living crisis, and increasing the prescription charge will result in more people missing, reducing, or delaying taking their medication, meaning their condition will deteriorate. 

"Recent research from the Royal Pharmaceutical Society and the Pharmacists' Defence Association revealed that more than a third of pharmacists (35%) said they have seen an increase in patients declining prescriptions in the last 12 months. This increase will only lead to a greater cost to health and social services and avoidable hospital admissions." 

You can find out more about the Prescription Prepayment Certificate or help you can get with NHS costs on the NHS Business Services Authority website.

We will continue to campaign for the government to review the exemption list and scrap the charge for people with long-term conditions in England.

On Thursday 29 February 2024 we handed in our open letter, signed by 616 people, calling for prescription charges to be frozen for 2024 and 2025.

Each individual prescription item costs £9.65, and at a time when living costs are increasing, working age people with long-term conditions are being forced daily to choose between heating, eating and taking their vital medication. 

Living with a long-term health condition or disability often adds to the cost of living. Many need more heating to stay well and extra electricity to power assistive technology devices.

We are deeply concerned that a further rise in the charge this year will lead to people skipping or not taking the full dose of their medication, and we fear this will make them sicker and put more pressure on the already under pressure NHS. 

We are pleased that hundreds have joined our call to ask the Minister for Primary Care and Public Health​ to freeze the prescription charge in England, to keep people with long-term conditions well and reduce the burden on the NHS. 

As part of the Autumn Statement, the Government announced a Back to Work Plan which provides support for health and employment schemes and tougher sanctions for those claiming disability.

Those sanctioned could be denied access to welfare payments and other benefits like free prescriptions or help with energy bills.

Disability campaigners and Prescription Charges Coalition members are really worried about this announcement, as it could further harm the health of people living with long-term conditions, many of whom may not be able to work.

Commenting, Laura Cockram Chair of the Coalition said:
“It's worrying that at a time when the Government should be trying to help more people manage the cost of living, they are instead looking at punitive measures for those who are unemployed.

​"Not only will threatening unemployed people with the removal of free prescriptions fail to encourage them back into work, it will likely lead to further health inequality. 

“Everyone should be able to access the medications they need, regardless of their employment status. Research from the Prescription Charges Coalition shows that being unable to afford your medicines leads to poor health, lost productivity and costly and avoidable hospital admissions.”