We want to hear from you - prescription charges i... - LUPUS UK


29,886 members26,457 posts

We want to hear from you - prescription charges in England

Chanpreet_Walia profile image
11 Replies

Have you avoided taking prescribed medication because of the cost of your prescription, even for a short period of time?

Have you suffered any consequences from not taking prescribed medication due to cost despite having a pre-payment card?

If your answer is 'yes', we would like to hear from you.

Please share your story with us and help make a difference to those living with long term conditions that are currently not exempt from prescription costs, email your story to Chanpreet@lupusuk.org.uk

LUPUS UK is a part of the Prescription Charges Coalition, which is calling on the Government to urgently reform the prescription exemption criteria in England, making prescriptions free for people living with long term conditions.

11 Replies
Treetop33 profile image

I have a prepayment card that covers just about everything available on the NHS. There are lots of hidden costs however to having a chronic condition e.g. vitamins, sun cream, pain relief gel. I'm sure these could be prescribed, but GPs don't like to do it. These days, I find myself working more just to maintain my regime.

Insomniacette profile image
Insomniacette in reply to Treetop33

I agree with treetop. I use the prepay system but the things that cost lots of money and cripple me are not prescribed eg vitamin d supplements, eye drops, mouthwash, vitamins to help my hair and nails which fall out and are brittle, iron for the anemia, eye compress and wipes to try to prevent my eye ducts getting blocked, xylimelts. These costs not covered.

Hamptons profile image

I am lucky to ever have been there but that is luck. The new prescription proposals really worry me that there will be an increase in patients with long term conditions not accessing medicines due to cost.We already pay for so many complementary therapies that we can not get free. Recognise there is a limited pit but prescriptions should not be changed.

Mollymaid profile image

Good morning Chanpreet

Moving forward, my concern regards prescriptions is the other rumblings in Parliament.

There is talk of the requirement that people pay for prescriptions until state pension age is reached - currently over 60s do not pay for these.

The raising of the state pension has already denied in particular a lot of women of a pension from 60 and to have to pay for medicine is of great concern, a nursing sister friend is quite right when she says a lot of people will be forced to ration medicines or go without, as choices will have to be made regards what money is spent on, food, housing or medicine.

Chanpreet_Walia profile image
Chanpreet_WaliaPartner in reply to Mollymaid

Hi Mollymaid,

We completely understand and agree with the points made by your friend. We are encouraging people to sign and share the 38 Degree's petition to stop prescription charges aligning with the state pension age - you.38degrees.org.uk/petiti...

We will provide updates about this matter when made available 😊.

Best wishes,


Mollymaid profile image
Mollymaid in reply to Chanpreet_Walia

Hi ChanpreetThank you ! I’ve shared this with all my friends 🤞have a lovely day 🤗

CavendishCool profile image

Good Morning Everyone,

Please could I just make the point that I don’t want to be on any prescribed medicines at all because I don't want to suffer from the Complicated Grief, Anxiety and Depression that primarily stems from authorities that deem it's ok to leave me coping with my cognitively (since birth) disabled brother who is too young and too "able" to be placed somewhere more suitable for his needs. I do not want to be on preventative asthma medication caused by years of commuting in smoke filled trains not even raising a cigarette to my lips ever seeing what it did to all my family who thought it was cool to smoke because they were told it was. I do not want to have Lupus, from where that appeared, I do not know, but I don't want to take Hydroxychloroquine, it makes me feel "ill" and muddles my brain to such an extent that I feel I've gone from a proper functioning member of society to a quivering wreck that is supposed to be happy that is all I've got. I don't feel happy. I'm terrified that if they charge me for my prescriptions that the part time self employed work that I can do because of my brother and my "illnesses" will take up my entire wages that I pay myself. Like other people have said - I pay £21.00 a month for eye drops and an eye plan because I can't afford the lump sum for the eye tests twice a year that Lupus has given me dry eyes. Our hospital does not do eye tests until you have had Lupus for 5 years. The SPF suncreams I have put on Klarna and cost me £23 per month for 3 months, so I've nearly paid for those. I'm now down to £7.00 a time for baby bath and shower gel that doesn't make me scratch or flare my skin from top to bottom (and it does) rash. Supplements? I've not been told about these so maybe my Lupus doesn't require it yet because mine is only "mild". At the moment I earn £75.00 per week. Of course I had furlough where I lost half of my clients never to return and because my furlough payment was based on the previous 3 years earnings, 18 months of which I couldn't work because I had a fragmented disc that needed an operation that I paid £8,000 for on my credit card because I was not deemed to be an emergency even though I was bed bound. Consequently my entire furlough payment consisted of the first one £600.00 of which £350.00 had to go to my accountant for doing my tax return and accounts so that I could claim furlough. The next two were half of that and my final one £600.00 which had to pay off a bit of the debt I built up. I think you might get the picture and of course there are lots and lots of people who are so much worse off than me. I dread to think how they might be coping. I suspect they're not. I think the thing that upsets me the most is that the powers that be just wake up one morning and decide these things in a very random fashion. I just don't feel safe any more, I don't feel that I even have a voice any more and even if I did, no one is listening. I've even written to my MP twice in one year. I think the Government have become so far removed from the people they serve. This is so evident by upping the N.I contributions so in effect they are taxing the people who help us, twice. I'm done now, apologies for the politics. In answer to your question, like everything I hope sense will be seen and a bit more thought put into this decision 🤞. I simply don't know how I will manage. I better start looking for a pre payment card...

Krazykat26 profile image

I am unable to work due to disability. So I rely on DWP payments.My worry is if the DWP stopped my money..which they can and very often do..I would have no medication.

I'm on all the usual lupus meds INCLUDING Prednisolone..I am steroid dependent now having been on them for four years. This medication if stopped suddenly could cause Adrenal Crisis which is life threatening!!

As others have said..having Lupus is an expensive buisness and I agree the sun creams, eye drops, photosensitive clothing etc add up to a small fortune.

So glad to hear that Lupus UK is adding pressure to stop this proposed change from happening.

Best of luck 🌈😽😽xx

noonoo57 profile image

Hi all,

Its is a worry I feel they take it away form people under the retirement age.

I am 62 and for years had a prepaid prescription charge card at £108 a year.

I would not have afforded my prescription. I am now on 13 repeat a month and if I didn't get them free now it would cost £118.30 per month. I would have to have a prepayment card again, no choice. If the government go on chronic illness where do they stop. I don't get disability payment or any other benefit because I still have my legs to walk and I can still drive and most other things but not worked since last March when my partner was diagnosed with head and neck cancer. So no income. I think if anymore is added to my prescription my GP will refuse. As far as I know the GP said it came out of the surgery budget. Maybe not got all this right but someone will correct me I am sure. Take care all.

Recently turned 60 so prescription costs don't apply for the time being.

However, GPs reluctant to prescribe and use a clinical pharmacist who has phone appts to prompt patients to buy over the counter. Clinical pharmacist says surgery costs on prescriptions is too high. It is annoying as sometimes want to discuss symptoms with a GP who is familiar with my medical history. It is not nice having to go through the whole story to someone else.

I use Hylo Tear (early morning) and Hylo Forte (before sleeping) eye drops which are expensive. Even using them my optician last week said my eyes are too dry. I have tried to reduce to one drop each time. GP never looked to see these things nor rheumatologist. Sun cream also expensive.

Things my elderly mum gets on prescription at another surgery, I have to buy over the counter. Vitamin D, Fibogel etc.

I've only just seen rheumatologist once and nothing diagnosed as yet. Guessing it will be months / years unto I have a diagnosis if any.

I have prepayment card too but like others I buy lot of supplements like vit D3 because adcal d3 done the opposite to what it should it ruined my nails, they went all soft flaky and painful, I take 6 supplements a day to help immunity etc also wondering why England is the only country to charge for medication its free in Scotland, Northern Ireland and Wales

You may also like...