Are you paying for prescription charges? Help us to scrap the charge for people with Parkinson’s

Parkinson’s UK is working as part of the Prescription Charges Coalition to end unfair prescription charges for people living with long-term conditions like Parkinson’s. People with conditions including diabetes receive prescriptions for free, and we’re calling for the same for people with Parkinson’s.

We’re currently spreading the word about this campaign and are looking for people living with Parkinson’s who are either struggling to pay the prescription charge and/or do not take all their medication due to the charge.

If you have any experiences regarding the prescription charge that you would be happy to share please get in touch with Lloyd Tingley at [email protected].

If you are 60 years old, or older, your prescriptions are free. If you have more than one prescription per month, you can pay 10.40 pounds for all of them. It’s not unfair.

I suggest you find another battle to fight.

I am fortunate (or not !) I am over 60 so, I get my meds free. But, if there are any petitions, I will be more than happy to sign and get my friends - both fellow twitchers and those without PD to sign.

Reah thank you for posting. This is a sensible suggestion as people with Parkinson’s often have less opportunity than others to earn money.

Thank you for your hard work.

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It is a lot of money to pay for those who don’t have much and have to carefully balance their expenditure. I also seems unfair that the proportion of the population who have to pay is not the proportion which has the most lucrative income - indeed they can be struggling.

I think its a good campaign , it is unfair if other long term conditions get free prescriptions so am all for it, w=thanks very much

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@Reah I’m bowled over by first reply to your post. Thanks for taking this on I didn’t realise other conditions get relief on prescriptions.
@Martini I don’t know anything about you so I hope you were just having a bad day when you posted. There are people who greatly need help with making ends meet. If you can afford it great but is there a need for you to be so rude?

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Ps if prescription costs don’t increase (unrealistic) and they’re still free when I get to 60 (even more unlikely) I’ll have spent over £2200

Hi @Martini,

There are many people living with Parkinson’s who are under 60 and will have to pay thousands of pounds on prescription charges in their lifetime. People with other long-term conditions such as Diabetes receive all their medicine for free, which we don’t think is fair.

That is why we take this work forward, to ensure all people with long-term conditions receive the same support.

I hope this clarifies things for you.

Best wishes,

Even my pharmacist can’t quite believe that I have to pay for my prescriptions! In view of today’s news about HRT prescriptions- being reduced to one fee per year- surely PD suffers should be able to have something similar, if not free?

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The problem remains that people do not understand Parkinson’s. There is not enough awareness of how utterly reliant those of us living with Parkinson’s are on medication in order to do pretty much anything and neither is there any understanding of the potentially devastating consequences if medication is not well managed.

Yes, exercise is important but I need my medication to be appropriate and working properly in order to be able to exercise. If I’m all knotted up with dystonia and I’m shaking from head to toe I can’t do much.

I believe that the prescription issue is part of a bigger problem. It links in with the worrying disappearance/reduction of specialist NHS services for people with Parkinson’s.

As somebody living with Parkinson’s now, I feel that I have to fight for everything in terms of healthcare. There is way too much talk about ‘empowerment’ (helpsheets and DIY healthcare?) and digital gadgets (that I can’t use due to my hands shaking) as the future of health care for people with Parkinson’s today for my liking - and the notion that we can just be referred back to a GP with a helpsheet for medication management as an answer to budget cuts just reinforces how little people understand about Parkinson’s and the need for really good medication management.

A Prepayment Certificate costs £108 a year and while I would love to see the prescription charges system being completely overhauled, I would actually happily continue to pay this in exchange for continued access to my PD specialist nursing service; I have long since given up hope of any sort of multidisciplinary team in this area - any other treatment seems to fall under the ‘empowerment’ umbrella - but I would like to think we could cling on to the few services that we have.

Personally, I would love to see a campaign that would highlight the need for good quality health care for those living with Parkinson’s today and I would like to think this would include access to specialist nurses and multidisciplinary support. Research is important but it is for a future generation; I sincerely hope that future generations benefit from the research drive but like tens of thousands of others, I am living with Parkinson’s now - and as we all know, it’s hard.


I agree with your comments about How PD is perceived. I am in the early stages having been diagnosed 2 years ago at the age of 48. I recent told an acquaintance that I had PD - she said “but you don’t shake!”. It was meant well, but it did make me realise that generally that is all people are aware of in the condition.

I also pay the annual subscription, which works out best for me. I do think though that if my gp surgery were more organised other options would work, at present getting repeat prescriptions is a hassle! I think in the current climate though this probably understandable.

I am fortunate to have excellent access to a PD specialist with check ups at least every 6 months and the option to contact them in between if needed. I live in outer London. If you are not getting similar support I recommend speaking to your gp. A fellow sufferer I know recently did this - they recommended a rejigging of her medications which has given her so much more energy. And less disturbed sleep.

Well said, I totally agree with everything you have written it is one continual battle after another to get the medical care that is required. Battling for health needs though is just the tip of the iceberg. There is the constant battle to obtain benefits that you could or entitled to if you symptoms have reached that stage.

My current battles with DWP are exhausting, frustrating and only demonstrate how government departments work in isolation. In September I was medically retired on ill health grounds and I have a medical certificate from the civil service stating I satisfy not only the upper tier requirements for the civil service ill health, but also the HMRC severe ill health requirements (in medical opinion will be permantley unable to hold down any significant kind of employment which would also go beyond normal pension age).
As I am under normal pension age I need my National insurance stamp paying for 10 more years. The only way to get this is to apply for ESA, so instead of wasting everyone’s valuable time I called DWP ESA helpdesk explained the position and the outcome and was there a different form apart from the online application I could fill out. Short answer no, but send in your civil service ill health certificate and it can then be sorted so you should not have to go for an interview at the job centre to find employment.

Outcome from DWP, having reviewed your application and submitted evidence, you are required to attend an interview at your local job centre who will contact you within 16 days. I am really looking forward to the interview which is going to be a complete an absolutely waste of my time and that of the DWP employee who will be carrying out the interview. Just one more hurdle to jump, hill to climb or battle to win against the system.


Warning this is long but I hope not too boring. If you make it to the end hats off to you but I won’t take offence if you give up on it. To be clear this is my personal view it doesn’t have to be yours.
This thread began because of the issue of prescription charges and understandably has broadened out into a much wider debate on all sorts of issues connected with living with Parkinson’s here and now, today in 2021. It is my personal view that the unequal playing field across many chronic conditions is that health and social care services have evolved piecemeal as different elements have come to the fore and so we have ended up with in effect, a patchwork service. Change only really begins to happen when issues become a political hot potato, cancer care, notably breast cancer care being a case in point. Currently it is social care… Parkinson’s although better than it was, still does not feature very highly in political circles, nor indeed do many other neurological conditions. Whilst research is of course important and valuable work is being done, we should all be shouting - campaigning - with a much louder voice to get not only the services we need without jumping through a million hoops usually judged by people with little understanding of the condition but also to get equality of services across the country.

The disparity between the quality and availability of health services is simply horrific. Even a cursory glance at some of the posts to the forum will show how bad it is, People who can’t make contact with their consultant or indeed, don’t even know who their consultant is. People who haven’t been reviewed in two years - way outside the NICE guidelines of every six months - and who have no access to specialist nurses. People left in limbo not knowing what to do or where to turn often at a time when feeling scared and vulnerable, just to name a very few examples. To my mind, this basic inequality is every bit as significant and important as the current debate on social care.

The fact that Parkinson’s continues to be poorly understood does not help the debate nor help move it up the political agenda. One of the reasons for this is the complexity of the condition which although will probably have similar symptoms amongst a number of us living with the condition, the impact and effect of those symptoms can and often is vastly different between individuals. Another reason is that all too often it is difficult to make your voice heard. To briefly use my own two very different experiences of hospital admissions as an example.
First I was admitted to a specialist London Hospital for a shunt to be fitted. I was able to self medicate and my surgery was scheduled to cause as little disruption to my medication cycle as possible. I was assisted in my personal care as I had explained it to them. Happy days. More recently I developed an infection and was admitted to a local hospital for what should have been 2 or 3 days as I had become dehydrated and fatigued. I was told I could not self medicate although I was quite capable of so doing (I later found this was not correct) my medication went totally awry because it did not match the standard round times and I kept bring told to wait. Result I went totally off my feet was an inpatient for 2 weeks and needed 3 weeks rehab before I was able to return home. It was an absolutely horrendous experience and I was made to feel by some, not all of the nursing staff, that I was a nuisance, a difficult patient because I kept speaking up and badgering them when my meds were due and, worst of all a liar. They clearly did not believe it when I said I lived alone with minimal help because that was not the person they saw nor did they see it was their actions that had caused my problems. I am only two well aware that my second experience is much more common than my first. I think it demonstrates however just how far away we are from getting the condition better understood.

Even if great strides were suddenly made in resolving the issues of understanding the condition, equality of services for all people with Parkinson’s and indeed equality with other neurological conditions, I am of the view that there is another element that statutory services will probably always struggle to fill and that is our need for flexibility to meet the fluctuating nature of Parkinson’s On the one hand I accept that resources are limited and there needs to be a way of fairly distributing that which is available. On the other hand however, the criteria used is all too often a blunt instrument which doesn’t allow for the flexibility managing Parkinson’s well demands.

Sadly I can’t offer any useful ideas as to the best way to start to unravel this very large muddle. Yes we can argue against prescription charges, poor quality services, lack of understanding even amongst professionals and dozens of other issues. As far as I am concerned many of the difficulties we encounter with a whole range of statutory services is precisely because each looks at a little bit when almost everything is inter-related to some extent or another.

Yes research is important and there may well be medication or other developments that improve the lives of those of us living with Parkinson’s. That would be wonderful. The other side of the coin however, the muddled, inconsistent and yes, unfair systems with which we also have to live cannot be ignored. Nor can bits be seen in isolation, It is a complex condition, needing complex and flexible services. In my opinion, it needs an holistic approach to review.
As things stand that is highly unlikely so I guess all we can do is carry on challenging, individually and together wherever and whenever an opportunity comes our way. A small victory is, after all better than none.


The experiences shared on this thread say it all! I also retired on ill health grounds a while ago after some pretty shoddy treatment from management at work over a period of years left me with no option (other than to be homeless and jobless). I was lucky in having the most incredible support from my immediate team but after being relentlessly signposted from agency to agency in my attempts to get some help with my situation, I pretty much had to work it out by myself. I have to say that the process has left me feeling so emotionally drained and battered that I still can’t face claiming anything other than my workplace pension. I admire your perseverence JPS and would be interested to know how you get on.

The wider medical profession does not understand Parkinson’s and the importance of good medication management, as your experience cleary highlights Tot, and I absolutely take your point about the different ways in which we all experience Parkinson’s. I was speaking to a lady a few weeks ago who had been recently diagnosed and had been put on a horrendously high dose of medication by her GP with quite devastating consequences. Through the efforts of herself and her family she eventually got specialist support and things have now been adjusted but what is happening to all the people out there who do not have the resources to fight for what they need? Self help is not enough.

The current patchwork Healthcare situation is totally unacceptable as is the unspoken suggestion that those of us with Parkinson’s should accept second-rate Healthcare because we’re not considered to be good value for money (no amount of treatment is going to alter the outcome - a major consideration in terms of decisions about the allocation of scant healthcare resources) but maybe all we can do is fight the small battles when we can and hope that eventually we get heard. Jx

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Hi all,
Read through all the above messages. All the facts are right. Awareness about Parkinson’s disease is very poor even among health professionals. I must admit I learned a lot after I have been diagnosed. Few weeks ago I have been to minor injuries unit and the nurse practitioner couldn’t pronounce my parkinsons meds and he said he never heard of those names. Being a nurse in NHS I know how much awareness needs doing in there. Myself and my collaegue organised a teaching programme focusing on the importance of get it on time every time the PD medications but due to the current situations and staffing we are unable to carry on with it. But I have been offered support to work it out in different way. The nurses who attended the sessions stated that they are only familiar with the common PD medications like madopar and sinemet. @Tot sorry to hear about your bad experience. This is an ongoing problem and needs fixing. We are implementing a new system to keep the nurses to make aware about PD medications, a card with the names of all the PD meds which can go into the id badge holder and they can quickly refer to clarify if it’s a PD meds or not. Further plans also in mind and trying to work it out.
Regarding the prescription I do agree with free prescription for Parkinson’s disease patients and other long term illness. I have been paying for my meds. First 8 months only 1 , then it’s two types , after another 6 months 3rd one joined not for PD though. At this point I came to know about the prepaid prescription service and started it. After another 3 months I don’t know whether to say fortunately I have been diagnosed with thyroid problems and started me on levothyroxine . Since then I am exempted from paying. Otherwise imagine , my husband is also on meds and I am the main earner in my house.
Hope in future things will get better and sorted.
Take care

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Hi everyone, :wave:

I found this thread really interesting and flagged it for the attention of my colleague who leads the policy and campaigns work at Parkinson’s UK.

She has asked that I share the following information:

Your experiences are sadly not unusual and part and parcel of what we’re campaigning for. In early 2020 we asked our supporters the most important things for us to focus our efforts on and they were improving health and care services, getting the right treatment at the right time and making the benefits system fairer.

I know the thread started by discussing prescription charges and the change announced last week to HRT prescriptions will be something we’ll be raising with the relevant Minister. We know thousands of people with long term health conditions struggle to afford medication that keeps them well and this can lead to extra pressure on the NHS with more contact with GPs or hospital visits. At the moment the Prescription Charges Coalition is focusing on opposing government plans to align prescription charges with the state pension age which would mean people who have to pay for their meds would do so for longer. If you’d like to urge your MP to oppose the Government proposal please send this email to your MP and ask them to sign Early Day Motion 406.

We know the quality of health and care services is variable across the country and we’re working with other Parkinson’s UK teams to drive the quality of services up through local campaigning activities, educating health and care professionals and supporting them to deliver more joined up services. Last week we launched our latest campaign action to urge the Health Secretary to share his plan to improve Parkinson’s services and understand what additional funding will be allocated to Parkinson’s. Please feel free to take the action and share with your networks.

We recently gathered insights and experiences from people with Parkinson’s about their interactions with the benefits system to use in our response to the government consultation on how the system should be changed. Some of the points we shared included that assessors and DWP staff’s understanding of the condition is poor, leading to inaccurate assessments and unnecessary appeals. We have specialist staff who are able to support people with Parkinson’s and carers to access the right benefits, so please do get in touch to access this support 0808 800 0303 or [email protected]

If any forum member would like to get more involved in our campaigning work to improve health and care services and the benefits system please sign up for our Campaigns Network or become a campaigns volunteer.

I hope you all find this information useful.

Best wishes,


Just a brief update on my battles with DWP (@Tot @Reah), well they phoned me and cancelled the job centre appointment based on my civil service ill health retirement certificate. Hooray I thought on the phone, however it was very short lived.

Unblieveably, I have to attend or might be a telephone call with one of the government’s health advisors to assess if I am really unable to hold down any employment due to my medical conditions (mr parky and several spinal conditions). Even more unbelievable it is with the same company who have already assessed me three times, once for the ill health retirement, again for HMRC server ill health confirmation and on the third occasion for DWP for my PIP application (still waiting on outcome of PIP).
I enquired surely 3 previous appointments with same medical advisor provider could they not use those. Of course the expected answer NO, quickly followed by if you do not attend or make your self available your claim could be dismissed.

Update to follow at some time not too soon going on current DWP application which was initially submitted on 23 June 2021. As always all you can do is smile :sunglasses:

Smile with a hint of a grimace perhaps. it does get ridiculous and quite apart from anything else wastes hundreds of pounds both financially and in the way of all sorts of resources in including your time etc.
When I applied for a PIP review I received the form with the relatively short return date of one month and dire warnings that my benefit could be stopped if I didn’t meet this deadline or apply for an extension I made it with one day to spare. The only information I got as to what was happening was when I rang up which was usually that I would hear in the next month.I was finally told my papers were with the decision maker and and that I would have a decision in two weeks. Well I don’t know where he was looking but the very next day I received the decision letter with the welcome news that I would be paid mobility at the standard rate, the care component would remain unchanged and best of all, that my PIP award was ongoing. It arrived 8 1/2 months after I had submitted my application

PS whenever they say my papers are with the decision maker it conjures up a picture of a god like sort of person in flowing robes wielding a quill pen who decides yeah or nay after a cursory glance at the papers - they always say the decision maker as if they virtually bow down to him or her should they happen to meet :rofl: