Parkinson’s UK took to the airwaves yesterday to make the case that prescription charges should be free for people with long-term conditions in England. John Hinson from Hull has Parkinson’s, he spoke to BBC Radio Humberside live in the studio and listeners were encouraged to join the debate throughout the programme. Our Co-Chair Matina Loizou, Senior Policy and Campaigns Adviser at Parkinson’s UK also spoke on the programme about the benefits of extending free prescriptions to all long-term conditions.

The story was also featured on BBC Look North, again with John talking about the fact that many people struggle to afford the pre-payment certificate and for others difficult choices must be made between buying their medicine or food for the family.  Matina discussed how our latest research shows that the NHS could save £20 million a year by scrapping just two conditions- Parkinson’s and IBD.

John said “I’ve got a condition that I’m going to have for the rest of my life. It’s going to get worse. I have to pay for my prescriptions- there’s something wrong there. It’s discrimination at the end of the day”  

Matina said “The NHS would actually save £20 million a year if they lifted prescription charges for people with just two conditions- Parkinson’s and inflammatory bowel disease…We think the system is unfair and out of date so we’re calling on the Government to look at the medical exemption list, review the situation and bring it up to date.”
You can catch up on BBC Radio Humberside until 16/10/2018
 You can catch up on BBC Look North (East Yorkshire and Lincolnshire) here until 7pm 19/9/2018

In May 2018, the York Health Economics Consortium published new findings that showed that scrapping prescription charges for just two long-term conditions (IBD and Parkinson’s) would save the NHS over £20 million a year.
Savings came from:

• 9% fewer A&E visits for people with Parkinson’s
• 11.4% less hospital admissions for people with Parkinson’s
• 7,149 less flares for IBD
• 3,887 fewer GP visits for people with Crohn’s Disease

These findings show us what we already suspected, scrapping prescription charges would in fact save NHS England money. At a time when budgets are tight, the Government should listen to evidence that shows the economic benefits of ending prescription charges for long-term conditions.

In just two days, on Sunday 10 June, the Medical Exemption List, which determines who is exempt from prescriptions charges and who must pay, will be 50 years old. In that time, advances in medicine have been remarkable, yet five decades on, the list remains largely unchanged. It is glaringly obvious that the list is no longer in step with the needs of people with long-term conditions.  

Throughout our campaign, we have heard from thousands of people, who have been forced to make impossible decisions so they can afford their life-saving medication.  These stories show the profound personal impact prescription charges have on people’s day-to-day lives and their ability to manage their condition safely.  
As we near the 50th anniversary, we look back at our campaign highlights and ahead at our future plans to keep the pressure on Government to scrap prescription charges for all long-term conditions.   

I was born in 1968 and so was the medical exemption list. This list decides who pays prescription charges and who doesn’t, but I didn’t have a say in getting Parkinson’s.

I was diagnosed with Parkinson’s aged 9, though I’ve had the symptoms since I was 7. Fortunately 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.

Since losing that exemption I’ve had to ration my medication to spread the cost, prioritising the most urgent ones and leaving others for later. I now pay monthly through the prepayment scheme. It’s stressful because I can’t live without my drugs. I’ve been on levodopa for so long that my body couldn’t cope without it.

I’ve had to start counting the pennies more and more. I resent paying it as it could still cost me thousands throughout my life and there is nothing I can do about it! 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 other people whose long-term conditions are exempt.

Last summer I shared my story as part of the Prescription Charges Coalition launch of their report Still Paying the Price which found that among those like myself 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.

New research published just last week by the York Health Economics Consortium now shows that for people with Parkinson’s (and inflammatory bowel disease), charging for prescriptions is a false economy to the NHS. By removing prescription charges, people like me are better able to stay well and avoid health complications- which would mean fewer GP visits and emergency hospital admissions. For each working age person with Parkinson’s the NHS would save £93 per year by scrapping prescription charges.

Next week the medical exemption list will be 50 years old- but I won’t be celebrating. It is time to change this unfair and outdated system. Add your voice by signing up to the Thunderclap.

​Matt Eagles @MattEagles

Everyone involved with this campaign has known for a long time that the additional costs to the NHS, resulting from people with long term conditions not taking their medication due to its cost, were likely to outweigh the money raised by charging them for the prescription they need. 
Thousands of people effectively told us so in our first Paying the Price survey back in 2013 and then again last year in the follow up report Still Paying The Price. 

Nevertheless, it was still amazing to see the scale of that potential saving to the NHS when the York Health Economics Consortium first shared the findings of their economic modelling with us.  Over £20 million per year in NHS savings for just two conditions of the 46 now covered by the Prescription Charges Coalition.  This gives us for the first time, a robust economic case for scrapping prescription charges for all long-term conditions.
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It was fantastic to be able to share this with MPs in Parliament this week (Weds 23rd May).  Thanks to the invaluable support from the many people who wrote to their MPs to attend this briefing session, 41 MPs and 3 researchers attended, many of whom were very interested and willing to give their support to the campaign to end unfair prescription charges for people with long-term conditions.  Other MPs wrote to express their support and willingness to write to the Minister to call for reform.

We now need to build on this. 
On 5th June, we are handing the petition into Downing Street – please help make this the strongest it can be by signing if you have not already done so and forwarding on to family, friends, work colleagues and anyone you think might be interested. 
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Thank you for all your support and please continue to help us to make prescription charges an issue that can no longer be swept under the carpet.
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Jackie Glatter, Health Service Development Manager, Crohn's& Colitis UK

wave and shout loudly ‘Hello Christine how are you doing’ and proceed to hand me the most enormous carrier bag you can imagine with my medicines in. I want the floor to swallow me up bless him!!! I am also on Enbrel injections which are delivered to my door.

What is interesting is I don’t pay for my prescriptions. Why you may ask? Am I any worse than any other rheumatoid arthritis sufferers. No, I’m probably in the same position as many others struggling with this debilitating disease. The difference is I have a Thyroid problem and was also recently diagnosed with Addison’s disease, meaning I am on long term drug replacement therapy in the form of thyroxine and hydrocortisone. These are listed as medical exemptions and prescriptions are therefore free. 

How random is that!! I have asthma and desperately need my asthma medication too … in fact I would be in a real mess without it. But this is not on the exemption list. The Government are looking to remove indigestion/acid reflux medication from the list of exempt medications too. I need those too and again would really struggle without my medication to help with that.

The cost of a 12-month prescription prepayment certificate is £104.00, which for those on low incomes is unaffordable. We live in Oldham which is one of the poorest boroughs in the country with areas with high levels of poverty and deprivation, overcrowding, low educational attainment and high numbers on free school meals and housing benefit. We have many families in our area dependent on food banks and family support centres.  Free prescriptions are essential to these families.

What is needed is a complete overhaul of the system, instead of a system which is inherently unfair and based on guidelines which were introduced many many years ago and don’t take into account the needs of today’s society. The list of exemptions no longer makes any sense. To add insult to injury there are free prescriptions in Scotland and Wales which makes it even more ludicrous.

I do agree with some things not being on prescription like paracetamol which cost pennies and other items which it costs more to dispense than the actual item itself but again that’s what should be reviewed. 

You could say I’m lucky not to pay for my prescription. You could say it’s just a fluke and I happened to be diagnosed with a disease on the exemption list.  Or in my case it’s buy one and get one free as I have two diseases on the exemption list.  But I’m not lucky. I don’t want to have these diseases and I certainly don't want to take a shedload of meds, but I also don’t see why someone else with rheumatoid and an equally troublesome co-morbidity should have to pay for their prescriptions when I don’t. ​

The whole system needs overhauling to deal with these anomalies and it needs to be fair for everyone and not a matter of random diagnosis. 

Right now, in the UK, there are about 60,000 people with kidney failure, with just over half alive due a kidney transplant and the remainder on dialysis.

Transplant is the gold standard treatment for kidney failure, but not everyone is able to have one and sadly there are more people needing a kidney transplant than there are kidneys available via the organ donor register. Every single day, one person will die while waiting for that precious call.
 For those 29,000 people on dialysis, they need either to go to hospital three times a week for 3-4 hours at a time for their life-sustaining treatment or they can do this at home. Either way, dialysis is a very challenging treatment. People on dialysis often have other conditions to manage, such as diabetes, and many people will feel unwell during and just after dialysis itself, as blood pressure can be too high or too low, and nausea, fainting and confusion are common.

Currently, some dialysis patients will qualify for free prescriptions, but this – rather complicated – exemption is based on the fact that any dialysis patient who has a permanent fistula (which is access for dialysis needles) that ‘requires an appliance or surgical dressing’ is entitled to medical exemption. They also need a doctor to confirm this and the NHS guidance on this even states that ‘whether or not you have a permanent fistula that requires an appliance or surgical dressing is a matter for your doctor's clinical judgement’. This means that in some cases a doctor will approve patients for exemption, but in some cases, they may not – based on their own interpretation of the rules. We have heard from a number of dialysis patients who were able to get exemptions and others who were not, so we know that there is a postcode lottery out there with some patients slipping through the net.
 
If that isn’t bad enough, the injustice really kicks in for those people who do receive that life-transforming transplant. To ensure that your body doesn’t reject your new kidney or kidneys, transplant recipients have to take immunosuppressant medication for the rest of their lives. They also need to take many other medicines to manage blood pressure, diabetes and the other conditions a person with kidney failure will have. Despite this, because they are now no longer on dialysis, they no longer qualify for free prescriptions. At the time when a person possibly needs it the most, this support is taken away.

Many patients go on to purchase a Pre-Payment Certificate, but they tell us how unfair it is and how they feel discriminated against, or that they were not aware their exemption was removed and have had to pay a fine. This group are also affected by the recent reports that the NHS will no longer provide sunscreen on prescription, as their immunosuppressants give a risk of skin cancer which is six times higher than the rest of the population.

It is not fair that anyone with a long term health condition should have to pay for their prescriptions and we think the current system is particularly unfair for kidney patients, who need to take medication for the rest of their lives, just to stay alive. We’re calling on the Government to review and reform this unjust and outdated system to make prescriptions free for everyone living with a long-term condition in England, as they are in other parts of the United Kingdom.
here to edit.
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Fiona Loud, Policy Director at Kidney Care UK

“There have been a few times where I have had to skip my inhaler because I have not been able to afford it. I can't understand why my brother gets his diabetes medication for free but I have to pay for mine despite being hospitalised numerous times because of my asthma?” Asthma UK Facebook post

There is nothing as frightening as not being able to breathe, yet this is the reality for someone in the UK every eight minutes as they are admitted to hospital for an asthma attack.

Asthma affects 1 in 11 people in the UK and tragically kills around 1,200 every year – that’s three people every day. Those living with this long-term condition often need to take several medicines every day to stay well. Asthma often affects people over their whole lifetime – from childhood to old age.

Despite being a complex condition, we know that when people are supported to self-manage their asthma there is significant improvement in their medicine adherence, asthma control and quality of life. Better self-management may result in fewer GP appointments, thus also reducing the 70,000 asthma emergency admissions every year in the UK and saving the NHS money.

While we know the NHS faces difficult times, it is unacceptable that 35% of people with asthma receive only the very basic elements of asthma management. Paying for medicines is a real issue, with 64% of people with asthma saying that the charges impact their finances. 

The costs associated with asthma are increasing globally. The UK alone spends in excess of £1 billion in direct healthcare expenditure on the condition. 85% of asthma patients are managed exclusively in primary care, with asthma estimated to account for around 2–3% of GP consultations. Asthma is also estimated to cost around £52m in GP consultations. This comes at a time when GPs are under significant pressure, thus affecting patients and impacting on the wider NHS.

Over the years, prescription charges have risen at levels higher than inflation and now represent a significant expense for people with asthma.

This year sees the 50th anniversary of the list of conditions exempt from paying for prescriptions.
Many conditions that people now live with for years either did not exist when the exemption criteria was created, or had such a short life expectancy that it was thought unnecessary to include them. Despite great medical advances in healthcare, the NHS’s medical exemption criteria for prescription charges has barely changed since its introduction. This level of progress is unacceptable and it’s time for a change.

In our recent annual asthma survey, nearly two thirds  of people with asthma told us that the cost of paying for their prescription had an impact on them. For some this means the cost of prescriptions prevents them from taking their medicines, forces them to take them in lower doses than prescribed or makes them choose between emergency inhalers and those that prevent future symptoms and attacks. These sacrifices put people with asthma at greater risk of a potentially life-threatening asthma attack. 

A flexible and fairer approach to prescription charges for people with asthma will benefit those who have been stung by rises in prescription charges in recent years and are struggling to pay for vital medication.

Join the campaign today by signing this petition to call on the Government to urgently reform the prescription charge exemption criteria in England.

Derry Begho, External Affairs and Stakeholder Officer, Asthma UK

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!