On 20th October, the BBC's Rip Off Britain  investigated why England is the only home nation to pay for prescription charges. The programme looked at case studies from people with long-term conditions in England and Scotland. It featured the Prescription Charges Coalition Co-Chair, Matina Loizou  from Parkinson's UK, discussing the negative effects of prescription charges on people with long-term conditions in England.

You can watch the episode here. 

Do you live in England and have to pay for prescriptions for your long-term condition? We'd love to hear from you.  Email us your case study at prescriptionchargescoalition@gmail.com. 

Last month we launched our new report Still Paying the Price, showing that people with long-term conditions in England are still struggling to afford the cost of their prescriptions. Many are sacrificing their health or other essentials just to get by.

We found that among those currently paying for prescriptions, a third had not collected medications due to the cost. Others reported skipping or reducing their doses to save money – leading to worsening health, time off work and emergency hospital admissions.

By lobbying your MP you can join the fight to get everyone with a long-term condition exempted from prescription charges. It would make a huge difference to people like Matt, who spoke to us about his experience:

“I’ve had Parkinson’s symptoms since age 7 and started receiving treatment aged 9. Luckily for me I had a working tax credit exemption until recently, which meant I didn’t have to pay for the more than 200,000 tablets I’ve taken in my lifetime – the cost would have been enormous.

Since losing that exemption I have to order my medications piecemeal to spread the cost, prioritising the most urgent ones and leaving others for later at the pharmacy. It’s stressful because I can’t do without them – I’ve been on Levodopa for so long that I’m told my body wouldn’t cope without it. As a result I’ve had to start counting the pennies more in other areas of my life – not going out as much, not buying as much food and worrying about the cost of my son’s school trips.

I’ve worked for as long as possible and paid my national insurance contributions, so it’s galling to think that I’m being treated differently to people whose conditions are exempt. Parkinson’s is a chronic condition that will never get better, and the medication costs can quickly add up. I have to take extra medicines just to control the side effects (like dyskinesia) of my Parkinson’s drugs. I don’t understand how the people responsible for dispensing medications can’t see that it should be exempt.”

Matt was born in 1968, the same year that the medical exemption criteria for prescription charges were created. The fact that they have been amended only once since then (to include cancer) means that almost 50 years’ worth of advances in medical technology and treatments have been ignored in deciding whether Matt should have to pay for his prescriptions.

You can support people like Matt by talking to your MP about these issues. Download our comprehensive lobbying guide to find out everything you need to know.

With your help we can win the fight to end prescription charges for people with long-term conditions. 

"Next year will mark the 50th anniversary of the creation of the medical exemption list, and we’ll be campaigning harder than ever to secure an end to prescription charges for everyone with a long-term condition.

To make that campaigning effective, we need up-to-date information on how prescription charges affect the lives of people with long-term conditions. 

By taking our new survey you’ll be contributing valuable evidence and bringing us one step closer to securing free prescriptions for everyone with a long-term condition. People like Heidi, who shared her experience with us.

“I’m forty and have Parkinson’s I take 36 tablets a day, as well as wearing a medicated patch. I also take a lot of pain medication for dystonia. I have a total of 19 prescriptions which is £160 per month or £1915 per year. I currently pay over £100 a year for the pre-payment certificate, which is cheaper than buying the medicine individually. However I think what isn't taken into account is the hidden cost of living with a long term condition like Parkinson's. I catheterise 3 times a day. To do this I need disposable gloves, and antibacterial wipes. I need to use alcoholic gel when washing my hands, which I do about fifteen times a day. I also had to pay for an attachable light due to poorly lit disabled toilets. The NHS only supply the catheter."

"Parkinson's has caused me to lose a lot of weight very quickly. As a result, I'm under a dietician and am advised to have a protein shakes and supplement drinks daily. Protein powder costs around £50 per pot. I have difficulty swallowing which means I need to drink thickened drinks, so when I'm out and about, I’ve had to buy a protein shaker style drink bottle to be able to thicken up the liquids I’m drinking. I want to stay healthy, and my GP and neurologist said vitamins would be a good idea, these cost me about £97 per year. To help my mobility there are numerous aids I have been advised to buy, for example a foam roller £40, walking poles £70, yoga equipment £100, gadgets to help undo jars etc. All these things mount up, and with the added cost of individual prescriptions or the pre-payment certificate it’s really expensive to keep my condition under control.”

Please support people like Heidi. If you have a long term condition and currently pay, or have paid in the past, for your medication (or you pay for the pre-payment certificate) spare 10 to 15 minutes and fill in our survey. 

You can also share the survey with your friends and family, and on social media. The more people we hear from, the stronger our case for change will be.

Many members of the Prescription Charges Coalition attended the party conferences in September and October and raised the issue of unfair prescription charges. In this blog, we hear from Natasha Burgess, Parliamentary and Public Affairs Adviser at Parkinson's UK, who tells us about her activity during his period.

'This year Parkinson’s UK took three major campaigns to the Liberal Democrats, Labour and Conservative party conferences. Key among them was asking party stalwarts to support our call for people with long term conditions to get free prescriptions. 

Conferences provide the perfect opportunity to garner support on issues as policy makers, politicians and local party activists are there to build excitement and momentum for the coming year. One important way of achieving this is finding campaigns that would engage more people in their work, because winning these campaigns would clearly improve people’s lives. 

The longstanding iniquity of a situation whereby a medical list that is nearly 50 years old dictates who is, and who is not, eligible for free prescriptions is a compelling point. With the exception of those who had worked on health, everyone we spoke with at party conferences was shocked that the prescription policy in England is based on such outdated information. 

We took people with Parkinson's to each conference with us. Couples Charlie and Sue, and Ronnie and Suzette did a great job explaining how important medication is for people with Parkinson's, and how the costs can quickly mount up. They also confirmed that many people with long term conditions are not told about the pre-payment certificate.

Many MPs were surprised to learn that the cost of giving medication to everyone with a long term condition would be such a small proportion of the current NHS budget, and they keenly listened to the personal stories we relayed of people who had suffered the consequences of rationing their medication. 

Unfortunately the Government does not have the data on the cost of emergency admissions due to not taking medication to the NHS. Not to mention the related costs to the economy of time off work.  

We are now following up on many relationships we developed with MPs who were keen to push this issue in parliament, whether by asking questions or putting in for a debate. Some even offered contacts in academia who they thought might be able to assist in putting together the evidence on the associated costs of people being unable to afford all their medication. 

Now, the campaign continues as we build up to the 50 anniversary of the original (and barely changed) medical exemption list. We know we are now even better placed to take this work forward with the passionate support we have been offered from MPs across the House. 

On Wednesday representatives from the Prescription Charges Coalition, and Stephen McPartland MP met with Lord Prior at the Department of Health to discuss prescription charges for people with long term conditions.

This meeting was as a result of a letter sent to the Secretary of State for Health by the Chairs of several All Party Parliamentary Groups (APPG) including Respiratory Health, Parkinson’s, Motor Neurone Disease, HIV and AIDS, Sickle Cell and Thalassaemia, and Heart Disease. APPGs are groups of MPs from all the political parties who agree to work together on certain topics they think are important. The letter asked the Secretary of State for Health to review the medical exemption list which sets out the conditions for which people do not have to pay for prescriptions.

The Prescription Charges Coalition believe this list is severely out of date and illogical. Although, when it was developed 50 years ago, it was done with input from the medical profession, a lot can change in 50 years! And we believe that people with long term conditions shouldn’t be in a position where they have to pay high costs for the life-saving medication they rely on.

Alongside Stephen McPartland MP, who chairs the Respiratory Health APPG, we conveyed out points about the unfairness of the current exemption criteria. The burden of prescription charges falls heavily on those of working age with long term conditions, and we know that many people with long term conditions struggle to pay for their prescriptions, often resulting in serious consequences.

Lord Prior took our points on board, and seemed sympathetic to the issues faced by people with long term conditions, but made no specific commitments.  It’s vital that as many people as possible raise this issue with their MP so that the Government are given a clear message that they must act.

Today, 1st April 2016, the cost of prescriptions in England increased to £8.40 per item. For many people with long term conditions, this will have a serious financial impact.
 

• Tell your MP how prescription charges impact people with Parkinson’s

 
We know that 1 in 3 people in England with a long-term condition have not collected medication due to the cost, and many cut down their dosage to save money. It’s clear this has an impact on their quality of life, and sometimes the results to their health can be extreme.
 
How you can help

• Tell your MP about this issue and let us know what they say by sending the response to prescriptionchargescoalition@gmail.com

• Follow @PrescriptionCC on Twitter and share our messages
• If this issue affects you, get in touch with the Prescription Charges Coalition and help us illustrate the problems people face.

"Paying just to breathe: the injustice of asthma sufferers forced to foot the bill for their meds" is a powerful article which highlights why everyone with long-term conditions should be exempt from prescription charges in England.

Currently, only certain medical conditions are exempt from charges and the list  (see below) has hardly changed since 1968 so  it is now outdated and makes no sense in terms of the conditions which have been included and excluded.
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People with certain medical conditions can get free NHS  prescriptions if:

• they have one of the conditions listed below, and
• they hold a valid medical exemption certificate.

Medical exemption certificates are issued on application to people who have:

• a  permanent fistula (for example caecostomy, colostomy, laryngostomy or ileostomy) requiring continuous surgical dressing or requiring an appliance
• a form of hypoadrenalism (for example Addison's disease) for which specific substitution therapy is essential
• diabetes insipidus or other forms of hypopituitarism
• diabetes mellitus, except where treatment is by diet alone
• hypoparathyroidism
• myasthenia gravis
• myxoedema (that is, hypothyroidism requiring thyroid hormone replacement)
• epilepsy requiring continuous anticonvulsive therapy
• a continuing physical disability which means the person cannot go out without the help of another person. Temporary disabilities do not count even if they last for several months

Or are undergoing treatment for cancer:

• including the effects of cancer, or
• the effects of current or previous cancer treatment

We were extremely sorry to hear the news today that prescription charges are to increase once again from 1st April this year.  

Responding to the announcement that there will be an  increase in charges to £8.40 in England on April 1st 2016, the Prescription Charges Coalition have issued the following comment:
 
"The continued rise in the charge for prescriptions forms a barrier year on year for working age people who rely on regular medication to manage long-term conditions. The charge applies to each item on the prescription, so if you have to take a number of medicines, as many with long-term conditions do, the cost can quickly mount up. Research shows that 1 in 3 of those with long-term conditions have not collected a prescription because of the cost. This can lead to poorer health, expensive hospital admissions and affect productivity at work. We welcome the fact that the pre-payment certificate cost has been frozen; however many people with fluctuating and long term conditions have told us that this cost can still be prohibitive. 
 
The Prescription Charges Coalition is pressing for people with long-term conditions in England to be exempt from prescription charges. They are disproportionately affected due to their need for ongoing medication, yet this is vital to keep them well and to prevent potentially life-threatening complications. Medicines are prescribed for a reason and a patient’s ability to pay should not be part of the equation. Those living in Scotland, Wales and Northern Ireland no longer have to pay as prescription charges have been abolished.
 
The list of those exempt from paying for their medicines due to medical conditions has barely changed in England since 1968, leaving it outdated, illogical and unfair. It is now well past its sell-by date. During this time, new illnesses and treatments have been discovered and diseases which were then fatal are now lived with for decades."

The annual Prescription Prepayment Certificate (PPC) has been frozen at £104 and the 3 month PPC at £29.10.
This will save you money if you require more than 12 items per year or more than 3 items over a 3 month period.

Follow us @prescriptionCC

We were delighted to hear the Health Minister announce that  prescription charges would not be making a return in Northern Ireland  in the short term, due to a "lack of consensus" on the issue.   Read the BBC news piece on this here.  

This follows  a very active and high profile local campaign led by the British Heart Foundation NI and MS Society NI on behalf of the Prescription Charges Coalition and Long-Term Medical Conditions Alliance NI.  

The Keep Us Well campaign report, which outlines the findings of a survey of 850 people with long-term conditions in Northern Ireland, makes a powerful case for  keeping prescriptions free for people with long-term conditions.  
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Representatives from all of the main political parties in Northern Ireland have committed to keeping prescriptions free for people with long-term conditions now and in the future.

At a public event held on 24th November in Stormont, attended by people with a wide range of long-term conditions, politicians from all parties have expressed their commitment to ensuring that people with long-term conditions do not have to pay prescription charges in the future. 

Critical to this has been the voice of all those who took part in our  survey  earlier in the year and/or contacted their Members of the Legislative Assembly (MLAs) on the issue.  Thank you also to all the MLAs who have supported us.
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With a Northern Ireland Assembly election just around the corner in May 2016, we strongly hope this commitment will be enshrined in manifestoes and policy documents.