We welcome the government's proposal that people needing HRT prescriptions will only need to pay once a year for their medication, and call on the Government to ensure this change also applies to men affected by Klinefelter syndrome (KS/XXY). This will significantly reduce the cost a person needing the medication will face, by up to £200 per year.
We pay tribute to Carolyn Harris MP for tabling the Menopause, Support and Services Bill as she has shone a spotlight on the unfairness of people getting vital medication for free in all other UK nations. We also thank all MPs who supported the debate and shared their experiences.
But thousands of people with other long term health conditions are still facing rising costs to simply live well and manage their condition. This is unjust and risks burdening our NHS, as medication remains unaffordable.
Now is the time for the Government to overhaul the outdated prescription charges exemption list.
The UK Government are consulting on aligning the prescription charge with the State Pension Age. This would mean that people in England would need to pay for their prescriptions until they're at least 66 initially and this would rise as the State Pension Age does.
We are opposed to this proposal as we don't believe the impact of it has been properly assessed for:
Earlier this week the UK government announced they would increase prescription charges in England on 1 April 2021.
We will continue to campaign for the government to review the exemption list and scrap the charge for people with long-term conditions.
Laura, who chairs the Coalition shares what activities we've been doing this year
2020 has been a challenging year for everyone. As a Coalition we've come together several times to discuss and agree activities we could undertake to raise the profile of prescription charges and get the UK Government to commit to reviewing the exemption list.
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
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.
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
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
Here you'll find information about the Prescription Charges Coalition's latest activities