I’m incredibly lucky as I live in England with an NHS. Wales, Scotland and Northern Ireland are treated a little differently - basically they have no prescription fees. Whether I earn enough to pay tax or if I am on state benefits, I pay nothing for my medical care other than £9 something for each item prescribed and issued by my GP. And if I was on certain state benefits I wouldn’t have to pay the prescription charges either.
For any meds prescribed by my rheumy, I pay zero, for example all biologics. Indeed for the GP scripts you can buy a payment plan per year at a hugely discounted price so that you merely pay £110 per year. So given I have repeat monthly meds of omeprazole, arcoxia, tramadol, BP meds, osteo meds, two asthma inhalers that would be 7x £9 something each month and with the payment plan it’s merely £110 per year. And come January when I reach age 60 even those script charges are then free. We never pay consultation fees to see either a GP or a specialist consultant.
However in order to get the best care, you do need to be able to navigate the NHS, not all GP’s or indeed all rheumys truly understand PsA. Not all of them read our funding entity’s (NICE) guide on how to diagnose most importantly and what to prescribe and when. There can be really long waiting lists to get on a consultant’s NHS list. For example if I were to see my extremely experienced PsA NHS rheumy now for the first time, the waiting list for that first appointment is presently running at 19 weeks. Given I’ve been on her list for close to 5 years now means I get ‘seen’ twice a year plus I have access whenever anything changes and needs her input.
And the NHS has a prescribed pathway of meds for PsA. I could never qualify to be prescribed a biologic unless two cDMARDs had failed me like mxt plus another like sulfasalazine. Then you tirate up the scale, as in you’re given the cheapest first so that would be biosimilars to humira or enbrel etc etc, before I would be prescribed Cosentyx. Unless of course my Cosentyx is to treat AS instead of PsA then I might have got on it quicker. Also if you suffer extensive psoriasis (I don’t) then different scales apply from a dermatological point of view too.
So the cost to the NHS of my Cosentyx of 300mgs is roughly around £1,800 every 28 days. It has decent buying power understandably too so gets lots heavily discounted. It costs me zero and it gets delivered to my door free too. I could if I wanted to have hydotherapy on the NHS too, but I’d be waiting for that as well.
Running alongside that I have Private Medical Insurance (PMI) from my employers. It gets taxed as in I pay tax (around £120 per year) for this benefit but otherwise it costs me nothing. I’m also not underwrittten so it will not take account of previous claims. It provides no cover for chronic diseases so things like PsA are excluded. But if I need to see a physio quickly as you always do, I can use that for 6 to 8 sessions, usually irrespective of whether it’s do with a chronic disease or not too. If I waited for the NHS to get me a physio I could wait months. If I have a new health issue (for me presently my GI issues) that needs investigating and diagnosing I’ve used this. So for example I saw my gastro consultant on Wednesday and he now wants an MRI of my small bowel and that’s already organised for next Thursday and should be covered by this policy. If indeed it does turn out that I have Crohn’s (still too unclear) then I would transfer to his NHS list as this PMI wouldn’t cover that either as it’s a chronic disease. Had I not had had this policy I would not be this far down the diagnosis path (since the summer) by a long shot. I would now still be waiting for a follow up consultation on a colonoscopy done in October.
So to answer the first question, the state of my finances has no bearing on my PsA care or indeed how well my PsA is managed and treated. That’s all to do with my ability or more usually a GP’s ability to get the patient in front of the right specialist. I told my GP which specialist PsA rheumy I wanted to be seen by. I always do a lot of that sifting work for them. And sadly I spent lots of my spare time helping other UK PsA sufferers access better care in the NHS too. Not everyone is as forthright as I can be on such issues. I do take time to teach others to be better advocates for their NHS care too. It’s essential skill to develop if you have a chronic disease in the UK.
The answer to the second question is more difficult. I don’t have to give up other things to cover PsA costs. However it can be hard for lots of PsA sufferers to hold down full time jobs as we all know. More so if it also has a physical element, even just a commuting to the workplace element. My job merely requires my brain to function and most of the time I work from home (especially since the pandemic). But PsA has held me back career wise too, although that might be complicated by my increasing age. I like to feel ‘useful’ and I’m a firm believer that working is actually good for you. And I really enjoy my job because it helps other people. I make legally binding decisions on disputes between consumers and the providers of financial services, so anything from insurance policies, bank accounts, mortgages, investments, pensions, loans etc. However if I had a million dollars I wouldn’t ‘work’ anymore but I would start helping more people access better care in the NHS, not just for PsA but for other things too. I would probably get involved in helping the NHS to improve too. Or I might do none of that at all and set up an animal sanctuary instead (I prefer animals to people most of the time) but would I cope with the physical issues of that - most probably not, sadly.
My heart breaks for all you guys on the other side of the ‘pond’ on the lack of a state funded medical service. On the fact that insurers decree even which med you shall be prescribed when they are not your rheumy nor prescribing specialist and override what your rheumy thinks is best. On the huge amount of energy and time it takes and wastes for you and indeed your prescribing doctors to negotiate with these insurers, constantly even just to stay on a med that’s presently working very well for you. I don’t understand how this helps anyone, or adequately and without negligence treats the patient effectively. And I still can’t believe the USA (at least given I’m not 100% sure how Canada works) won’t embrace state care properly.
Granted the NHS has its issues but with the right push and attitude you can get excellent medical care which is basically just plain free.