The UK Government are currently consulting on aligning the prescription charge to the State Pension Age.
The Prescription Charges Coalition oppose this proposal and are encouraging supporters to email their MP asking them to raise concerns about this with the Department of Health and Social Care.
Media pick up our concerns
Over the past few weeks the Coalition have shared our concerns about the proposal with various media outlets.
Our comments have been covered in The Daily Express and also on BBC Radio Humberside (from 3.16.30) after Labour councillors in North East Lincolnshire condemned the proposals.
It's crucial the Government hear from people who will be affected, so please email your MP, sign the 38 degrees petition and respond to the consultation by 2 September.
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:
Last Thursday (1 April) the Coalition was mentioned in over 500 pieces of media coverage across the country, as we warned that the cost of a single prescription item could reach over £10 by 2025.
We managed to secure national coverage in The Metro, Daily Mirror, Daily Mail, MSN UK and across hundreds of regional publications.
Many of our charity supporters also shared their support on their social channels using the hashtag #ReviewTheList
We'll continue to campaign for the Government to review the prescription exemption list and scrap the charge for people with long-term conditions.
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
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
Here you'll find information about the Prescription Charges Coalition's latest activities