Spina bifida is a complex condition involving most of the body- pain, high blood pressure, infections to the skin and tissues, pressure sores and thin bones are commonplace. Until relatively recent times, open spina bifida led to death in the infants or children born with it, in the vast majority of cases.

From the 1960s, a breakthrough in treatment meant lives could be saved, and many of the 4000 babies born with spina bifida each year at that time survived. However, by the mid-1960s, it was apparent that renal failure, arising from abnormal bladder function, was a severe, often fatal complication. It became a routine part of early treatment to surgically bypass the bladder, diverting the urine into a permanent stoma on the abdomen.

When the medical exemption list was published in 1968, the list of people exempt from prescription charges included those using collection devices for people with permanent stomas, so the vast majority of people with spina bifida received all their prescriptions, (including those for unrelated conditions) without charge.

Advances in medical technology meant that from the late 1970s, fewer people used a permanent stoma.  New techniques using a temporary thin catheter coupled with medication to relax the bladder allowed many people with spina bifida to achieve continence. Most children from the 1980s grew up with this method, and some adults had their stoma reversed to improve their body image.

However, despite gaining all the benefits of better health and improved quality of life, intermittent catheterisation meant people with spina bifida lost exemption from prescription charges. Unless working adults met the criteria in some other way, such as epilepsy, they needed to pay for prescriptions for catheters and bladder relaxant medications.

More recently, advances in bowel management, such as irrigation, have further liberated adults with spina bifida from ill health and incontinence, allowing some to have the confidence to take paid work for the first time in their lives. The equipment is available on prescription, and yes, they have to pay!

To live comfortably, people with spina bifida tell Shine they often have between 5 and 11 prescription items every month. Even with the ill-publicised Prepayment Certificate, living and working with a long-term condition gets expensive. For those entering the world of work, prescription charges add to the financial burden that people with long-term conditions like spina bifida bear.

It’s high time this unfairness was ended. In June this year the medical exemption list will be 50 years old. Please sign the Petition calling on the Government to urgently review this situation so that people with long-term conditions don’t have to struggle with the cost of prescriptions. Medical technology has advanced- but this list is stuck in the past!

Gillian Yaz
​Health Development Manager at Shine

Thousands of people headed to Brighton last weekend (14-15 April) to support competitors taking part in the Brighton Marathon, a gruelling 26.2 mile challenge finishing at the seafront.
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​Among them, the team at Parkinson’s UK were out in force promoting the Prescription Charges Coalition petition calling on the Government to scrap prescription charges for people with long-term conditions.

Over the weekend the petition gained more than 1,000 new signatures and was described as the ‘hot topic’ of the weekend by Brighton Marathon organisers.

Parkinson’s UK had more than 100 runners in the marathon and the 10k, who collectively raised more than £60,000. One of our runners, Richard Curtis, told us that one mile into the race he passed a couple of competitors who were talking about the petition and the impact of prescription charges on people with long-term conditions: “So as well as getting people to sign the petition, having it in the charity village also brought this issue to people’s attention, so well done!” he said.

​Many competitors and their families, friends and supporters who found us at the Charity Village were shocked to hear how unfair and out of date the current system is, forcing people with long-term conditions to make impossible choices between vital medicine and other essentials like food and bills.

The list of medical conditions exempt from paying the charge hasn’t changed in 50 years, apart from the addition of cancer in 2009. In the runup to the 50th anniversary in June, the Prescription Charges Coalition are calling on the Government to urgently review the medical exemption list.

​Research released last year highlighted that a third of people with long-term conditions reported not collecting a prescription due to the cost. More than a third also said they skipped or missed medication doses to eke them out until pay-day and then required more medical treatment. This then cost the NHS more in GP appointments and tests. We spoke to one woman, Zoe, who has kidney disease and was hospitalised twice because she had to wait until pay day to collect her prescription. In hospital, she had a lumbar puncture and MRI scan. These costly treatments would have been avoided if she had taken her medication on time. 
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​Please join more than forty organisations and charities representing people with long-term conditions not entitled ​to free prescriptions by signing and sharing the petition ​today. Medicine has come a long way in 50 years, but this list is stuck in the past. Join us and call for change!

Imagine being told by your GP that after months of ill-health all the tests confirm that you have a life-long condition. You may have to change your life to cope with your symptoms and have regular medical appointments. And what about work – how will they take it if you need to drop a shift at short notice because you’re unwell? Medication will help but as you are in work, not on benefits and live in England, you’ll need to pay £8.80 for every item on your prescription. How’s that going to affect the family finances?

As a community pharmacist I often hear exactly these kinds of concerns from people who come in clutching a prescription and needing advice. They’re not alone – around 15 million people in England have a long-term condition.

Some long-term conditions attract the prescription charge, but others don’t, which is deeply unfair.  This situation has arisen because the list of those exempt from prescription charges was set up 50 years ago and hasn’t changed since. It was established at a time when people with certain illnesses weren’t expected to live that long and other conditions hadn’t even been discovered yet, for example genetic disorders, some autoimmune diseases and HIV.

Large scale surveys of patients consistently show that 1 in 3 people who work and have a long-term condition struggle to afford their medicines. Some have to ration the medicines they take.  People frequently say to me about their prescription “I can’t afford all of these – which one can I do without?” Others have to choose between paying for their medicines or household bills. They face medicines poverty because they have an illness they don’t want.

The same surveys show that around 1 in 5 people with a long-term condition don’t buy a pre-payment certificate,  a kind of season ticket for people needing regular medication, because they feel they don’t get enough prescriptions to benefit from one. This is particularly true if your condition fluctuates and some months you need a lot of medicines and then others you don’t.  Buying a pre-payment certificate is also beyond the means of many at £104 per year.  If you are on a zero hours contract with a variable monthly income, paying regular instalments for medicines you may or may not need that month becomes a luxury you can’t afford.

Prescription charges act as a tax on the sick that impacts on people’s health. If you can’t afford to take the medicines you need regularly and you become really unwell, the Government ends up paying for the knock-on expense of hospital admissions and at around £400 a day for a hospital bed that’s a significant cost. This isn’t a party political issue. The problem has existed for decades. 

The Prescription Charges Coalition is an organisation made up of 40 charities campaigning to abolish unfair prescription charges for people with long term conditions. It is calling on all political parties to abolish the unfair list of selective medical exemptions drawn up in 1968 and ease the financial burden on those least able to pay, improving health and reducing costs in the long-term too. Join the campaign today by signing the e-petition  today and help end medicines poverty for those with life-long conditions who can’t afford to pay for their medicines.
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​Sandra Gidley, Royal Pharmaceutical Society

The reason for Poppy’s morning struggle? Ankylosing spondylitis (AS), a form of inflammatory arthritis which most commonly affects the spine. It can also affect other joints, eyes, bowels, skin, lungs and heart. At best, AS can be managed with anti-inflammatory drugs and exercise, but at its worst, a combination of strong medications is necessary.

Poppy was diagnosed with the condition three years ago, after showing symptoms from the age of 13.
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Poppy gets on with life as best she can, studying at Manchester Metropolitan University and working part-time to support herself through uni. She is supported by her partner Ben, who Poppy describes as “amazing”. Her university is understanding, but teachers and peers will never know just how painful life can be with AS – even something as simple as sitting in the wrong type of chair can cause incredible pain and discomfort. Despite this, Poppy maintains a positive, proactive attitude.

She has, however, seen some dark times due to AS. Over the years she has been prescribed a huge number of different drugs to help her with her daily pain and fatigue. Poppy also is also hypermobile, meaning her joints painfully move beyond the normal range, and lives with fibromyalgia, a long-term condition that causes pain all over her body. As such, it took a long time for her consultant to be able to find the right combination of drugs. At one point, Poppy was on seven different drugs to combat her condition.

The monthly cost of these prescriptions was £61.60 – an unaffordable sum for a student working part time. This meant that she often skipped her medication for two to three weeks at a time, forcing her to miss lectures due to pain and her inability to move.

Without medication, so many people with ankylosing spondylitis like Poppy don’t have the quality of life that people who don’t live with a long-term condition do. Please support those who need it by signing the petition, which calls for the medical exemption list to be revised and include free prescriptions for all those living with a long-term condition.

For more information on ankylosing spondylitis (axial spondyloarthritis) visit www.nass.co.uk. ​

The world has changed remarkably in the last 50 years, especially in terms of medical and technological advances. In many ways, this is extremely positive for people with Crohn’s Disease, Ulcerative Colitis and other long-term conditions.  Greater understanding, more drugs and new surgical techniques have transformed the options and outcomes for people who are living with Crohn’s and Colitis compared to 1968, when the prescription charge exemption criteria were created.
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However, there is still no cure available and, in fact, the more we find out, the more complex these conditions turn out to be. What is particularly difficult is that people with similar symptoms often respond differently to the same treatment, which means it can take months or years of pain and frustration to arrive at a treatment that works and, even then, this may fail over time.  

We have been told by the Government that the records no longer exist which would explain why certain conditions were included or excluded from the prescription charge exemption list. What we do know is that, because the list hasn’t been comprehensively updated for 50 years, it is completely out of step with changes in the management of Crohn’s and Colitis and many other conditions besides.

In one of the peculiar quirks of the system, those who have a permanent stoma (an opening on the wall of the abdomen that diverts the contents of the bowel out of the body) are eligible for free prescriptions, while those with Crohn’s or Colitis who require continuous medication to manage their condition are not. All clearly face a significant additional cost burden throughout their lives and it is crucial that this is recognised.

This arbitrary distinction makes no sense today and is leading people to self-ration medication they need to keep them well. As a result, flare-ups can occur and can result in people needing stronger and more expensive treatment, potentially leading to surgery and an increased risk of colorectal cancer. This affects their ability to work and can have a devastating impact on family, social life and an individual’s self-esteem.

The current language of the NHS is focused on ‘value’, ‘medicine optimisation’ and ‘self-management’, yet this archaic and inequitable system of charges and exemptions is entirely counterproductive to these aims and it is high time that it was overhauled by the Government.

It’s time for change.  It’s time to end prescription charges for people with long-term conditions. 

Commenting on NHS England’s consultation, launched today, which proposes to rein in prescriptions for many over-the-counter products, Matina Loizou, Senior Policy and Campaigns Adviser at Parkinson’s UK and Co-Chair of the Prescription Charges Coalition, said:
 
“NHS England has decided to play the role of Ebenezer Scrooge this Christmas by launching this cruel consultation.
 
“If seen through, these proposals would be a catastrophic blow to some of the country’s most vulnerable and unwell people who rely on a variety of medication and treatments to live, work and be well.
 
“We’ve heard distressing and alarming experiences from people who are facing impossible choices over whether they should eat, heat their home or pay for essential medications. Expanding the list of products unavailable via prescription will increase the financial burden on people throughout the UK who have already suffered enough.”

To read more about the consultation, please follow this link. 

Commenting on proposals to reinstate prescription charges in Northern Ireland, Matina Loizou, Senior Policy and Campaigns Adviser at Parkinson’s UK and Co-Chair of the Prescription Charges Coalition, said:

“The reintroduction of prescription charges in Northern Ireland would be a blow to some of the country’s most vulnerable and unwell people who rely on medication to live, work and be well.

“In England, where prescription charges are still in place, we’ve heard distressing and alarming experiences from people who are facing impossible choices over whether they should eat, heat their home or pay for essential medications to treat life-threatening conditions.

“It’s a travesty that prescription charges in England are preventing people from getting the treatment they need, and alarming that Northern Ireland would consider reinstating prescription charges even in a budgetary outlook.”

For further information on the proposal, please follow this link. 

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.