The recent coverage of the NHS clampdown on “prescription fraud” coincided with the anniversary of my daughter’s death.
Emma had mitochondrial disease. It’s progressive and currently there is no treatment and no cure. There are only drugs to manage your symptoms and, with hope, prolong your life. Emma became ill at 21, at a time when the world should have been at her feet. She largely got her head around all that and dealt with her illness with tremendous courage, but she could not understand why she was also forced to struggle to pay for the prescriptions that were so essential to her when others were exempt.
She worked reduced hours due to her illness and lived with her partner, a newly qualified nurse, so was not entitled to any help with charges. The cost and injustice were too much for her to bear. For her, the lack of exemption from prescription charges effectively invalidated her illness. It was as if the NHS was saying, ‘Other illnesses count, but yours doesn’t.’
When you support your child of any age through a serious illness, your desire to protect them grows ever stronger, at the same time your ability to do so grows weaker. When you can’t alter the big things – the illness, the prognosis, the pain your child is in – it becomes more important to try and at least change the things you can. At first, we paid for the prescriptions ourselves, but Emma didn’t want dependence on her parents as an adult, so we decided to take it upon ourselves to collect Emma’s prescriptions and reluctantly, but purposely ticked the box that said she didn’t have to pay, because it seemed the least incorrect thing to do. We wanted to be held to account, to have our day in court, to pay the fine if we had to … and to raise the profile of this injustice. We didn’t do it lightly, but couldn’t support such a system within the NHS – an NHS which we believed was about the burden of cost not falling on the long-term sick.
It’s astonishing that people with cancer had to pay prescription charges for their drugs until 2009 when cancer was added to the exemptions list ... the only time it’s been adjusted in 50 years. And yet people with illnesses just as devastating still pay for their vital prescriptions drugs every single day. This is not about ‘my illness is worse than your illness’ in any way. This is about treating people fairly and equitably.
I have to speak for Emma and her feelings on this because she can’t: the illness that the prescription charge exemption didn’t acknowledge killed her last September, aged just 28. Her ‘long-term illness’ has ended all too soon.
The most we can hope for now is that Emma’s death will count. On Emma’s behalf, I ask you to please see how cruel and unjust it is to negate someone’s illness by not including it on the exemptions list.
We need outrage. We need the same outrage for Emma – and others like her with a whole variety of horrendous illnesses – that we’d have for people with cancer in this position. Having an unfair list of conditions which are exempt from prescription charges is simply not okay.
We need a review. We need change – and we need it now.
Author: Christine Beal
You can find out more about Emma's Mito Mission here
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
The petition hand in
In June campaigners from Asthma UK, Crohn’s and Colitis UK, Motor Neurone Disease Association, National Rheumatoid Arthritis Society and Parkinson’s UK, took our petition to the heart of Government. Signed by almost 23,000 supporters, our petition called on the Government to scrap prescription charges for people with long-term conditions. Back in July we heard back from the Government about the petition we delivered to Downing Street.
The Health Minister, Lord O’Shaughnessy, said in his letter ‘The Government has no plans for a review of the prescription charging system in England. As you know, almost 90 per cent of prescription items are free on the NHS in England, and a broad range of prescription exemptions are in place’.
What is the issue?
This year marks the 50th anniversary of the Medical Exemption List which is the list that determines who is eligible for free prescriptions. Except for the welcomed addition of cancer in 2009, it remains unchanged. This means that several conditions are not included either because they had not yet been discovered (such as HIV) or those affected by it were sadly not expected to live into adulthood. It remains grossly out of date.
We know that many people are struggling to keep up with the costs of medicine they need to keep them well. Too many people are forced to make impossible choices between heating their home, buying food, or paying for their prescriptions. We know that this has an impact on medical adherence,33% of survey respondents told us that they have not collected their prescription due to cost.
The economic case
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:
The Government’s response is disappointing, but we are bolstered both by new evidence and your support- thousands of us will keep pressure on decision makers to revisit prescription charge exemptions.
As a coalition we are working hard to keep prescription charges on the public agenda. Last week, Clinical Lead for Asthma UK, Dr. Andy Whittamore, told BBC Radio 5 live how prescription charges were barriers to people accessing life-saving medication (listen from 0:38)
Support our campaign
Our campaign doesn’t end with the petition hand in. You can help us by meeting with your local MP to discuss how prescription charges affect people with long-term conditions. Download our lobby pack - a complete guide with useful information and tips on meeting with your MP.
You can also keep up to date with all of our latest campaign work by signing up to our mailing list.
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.
22,281 voices strong
The lead-up to the anniversary has seen thousands of supporters rally behind the campaign. Our petition, launched in February, was 22,281 voices strong, and we have been overwhelmed by the response from supporters who let us know how much the campaign has meant to them.
On 5 June, campaigners from Parkinson’s UK, Motor Neurone Disease Association Asthma UK, the National Rheumatoid Arthritis Society and Crohn's and Colitis UK, headed to 10 Downing Street to deliver the petition.
A false economy
As so many people tell us, prescription charges are a barrier to accessing medicine. Last summer, a third of survey respondents reported that they have skipped or reduced doses due to cost. By ending charges for people with long-term conditions, the NHS would see a reduction in GP visits, emergency hospital admissions and inpatient days.
In May, new research by the Prescription Charges Coalition, carried out by the York Economics Health Consortium (YEHC) confirmed what many of us had suspected for quite some time: scrapping prescription charges for people with long-term conditions could save the NHS money. The research shows savings of more than £20 million per year for just two conditions, Parkinson’s and inflammatory bowel disease. It shows that prescription charges for long-term conditions are in fact a false economy, costing the NHS more than the revenue they bring in.
We launched the report in Parliament on 23 May and with the help of our supporters (2,000 of you contacted more than 500 MPs to ask them to meet with us!), we met with 40 cross-party MPs on the day who were interested to hear about the potential savings to the NHS an updated exemption list could bring.
The Medical Exemption List is arbitrary and remains grossly out of date. Armed with the new research and thousands of passionate supporters we have plans to keep this issue firmly on the public agenda. Make sure you sign up to our mailing list to stay informed!
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.
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.
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.
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.
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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.
Now is the time
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.
How will this impact people with asthma?
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!
Health Development Manager at Shine
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