Think the topic kind of sums it up. I will try not to swear but my frustration is just so over the top today after a series of phone calls and ‘live chat’ with sciensus and also biologics nurse I just have to let off some steam with people I know understand.
So very shortened version of what’s been going on. On 9th August I was approved by biologics nurse at the rheumatology department for tofacitanib my 1st treatment in almost two years if you can believe that however much I begged pleaded and swallowed short courses of steroids which upset my stomach and gave me gastritis every time. But pandemic and all that I understood that for most of it I would have to put up with it and just manage on painkillers which don’t really help and the RA is rife and debilitating after so long without meds. Anyway back to topic, so jumped through the hoops signed all the forms. Moved house on 13th August made doubly sure my details were updated with EVERYONE so all ok or so I thought. I have a pretty bad antibiotic resistant chest infection atm which isn’t helping my mood or my debility but thought I’d catch up with sciensus as 6 weeks waiting is perhaps long enough or far too long whichever way you look at it. Well have they heard of me NO is my account still open from two years ago when I was taking baricitinib NO do they have details of the new meds either at my new address or my old one NO. All I got was we haven’t received a registration form for you which basically says ring the hospital again for the 3rd or 4th time and they’ll then tell me that they’ve done it and to contact sciensus. So I ask you dear lovely forum people who the hell do I ring ? Who can sort it out ? What sort of crap system is this and when is hell next going to freeze over so I can get some treatment ? After of course yet another two weeks of antibiotics lol.
Phew rant over feel better for offloading but what is a woman supposed to do?
Another little comment is the consent form I signed has a number on it for prescription co-ordinator and guess what the number doesn’t exist so another avenue closed and nurse helpline for biologics isn’t open today and only open for an hour and a half tomorrow so back to the drawing board and redial for no doubt all of the time that they’re supposed to be there.
Sorry promised I’d finished my rant. Hope your day is going better than mine.
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That sounds horrendous; can you email PALs/complaints, sounds like you’ve been incredibly patient over a protracted length of time, or can GP expedite things for you. I’ve often found if you put things in writing you get a better response x
Haha yeah wish I could no one with email details to complain to. I’ve already had my consultant get involved still nothing. I’m at a loss. But thanks for the idea. Just need to perhaps keep on at them all until they’re sick to death of me lol.
Emails tend to get overlooked. Proper letters sent recorded delivery by her majesty’s mail get more attention. Write the words recorded delivery on the letter as well as the envelope and the paper should be a bright eye catching colour. White paper just gets lost on desks. Believe me. I know what works. I was a medical secretary for years. Buona fortuna Bx
So sorry and keep at them even though it is so debilitating. I am chasing and pressing for all sorts at the mo which is very slow. A person is harder to treat when you have been allowed to go downhill/flaring. Hope you hear very soon. I got stuck between hopefuls and HaH (now Sciensus) pharmacies and they messed me about for over five weeks. I ended up bedbound after almost 3 months of waiting for the medication. 💗🙏🏻xx
Yeah you appreciate where I’m at then. Already have my GP worried about this chest infection they’re telling me to go to A&E if I feel even slightly worse but that’s not happening as I am improving slowly. Just not got the fight in me really. I’m never going to improve if I can’t get meds when I’ve got rid of this infection. Grrr just don’t need it as non of us do but most have issues of some kind. Very annoying.
Pharmacy at hospital send the script to HaH/Sciencus once the rheumy has approved/got approval and mine got lost twice between hospital pharmacy and company. I phoned my rheumy and she intervened and said to the pharmacy and to HaH we need to start this process again as priority. It needs to be flagged as urgent all the way.
I agree with you spoke to rheumy biologics nurse on Tuesday but sciensus have said they can’t / won’t do anything until they’ve received a registration form for me. Not good enough is it. Sounds like you’ve had similar problems which isn’t good for you either.
Yep already done that but they were more concerned quite rightly with my current chest infection which I know I have to sort first. It’s just that if I get rid of it and am then in a position to start new medication I’d like to have them. So thought two weeks longer would be enough time to get things moving but maybe not ! Sorry all ideas are very welcome thanks for the reply.
Absolutely right - you need to get rid of the chest infection as your top priority. Plenty of rest, keep warm (you have put your heating on already haven't you!), hot water bottles, lots of treats, plenty of chocolate ...
Haha sounds like just the ticket have devoured a vegan chocolate cake that was bought for me. I’m not vegan just have an egg allergy. Apparently the NHS website I looked at said if possible to cut down on the dairy with doxycycline as it stops absorption somewhat so no milk chocolate for me or milky drinks but yeah staying warm ish without overheating but I don’t have a temperature so that’s good. Just cough cough cough cough lol.
Me too and can be a bit laxative too. So herbal tea and decaf coffee but I am having a probiotic to help my gut so I don’t end up with anything else with GP’s approval and not at the same time as antibiotics of course at least four hours after.
I find it’s any chocolate upsets my catarrh. Soya lethicin I expect! After 22 horrible bronchitis episodes I’d rather be clear of bronchitis than eat chocolate so o don’t feel sad at all. Randoms are my new treat! xx
Yeah already had gastritis because of pred so had to stop that too. Don’t eat much chocolate it either makes a quick exit or puts me to sleep as well as catarrh like you so give it a miss too.
Yup it was awful. You will only get hospital pharmacy to send the request to Sciensus when the rheumy gives them it. Sciensus can’t do anything into they get a signed hospital script. It’s like that every three months for your meds as a rheumy nurse was so slow and disinterested he delayed eveyone’s meds as he had to approve the DMARDs and sign them off and then show the rheumy before she sent them to HaH as the pharmacy there told me. I lost a lot of use in my middle fingers (shame that!! 🖕🏻) waiting for my med in 2015 and ended up on oral morphine and oral steroids and took me 6 months to be able to walk properly again it got so bad. I hope your rheumy nurse marks it as urgent.
Won’t hold my breath for that one. Only reason I managed to speak to her on Tuesday was that they had my sputum sample results which I had waiting a week for so chest infection got worse but at least my GP was informed finally and prescribed them ASAP and although they weren’t the exact ones micro suggested as they would have put me at great risk of c-diff they’re the same group of antibiotics and seem to be working.
Disgusting they are doing this. I want to kick their bottoms (one leg quite capable of lifting up that high!) Keep at them every week and say .. say to them this delay is making you so unwell and immobile and you’re harder to treat. When you know it’s been sent to Sciensus phone them and ask to speak to their head of pharmacy. Say the same. Someone else will if you don’t.
I just moved house…so I typed out all the details…and sent a copy to every hospital department I deal with….including the blood test laboratory & the accounts department….when you include them…they check everyone else knows.
I got all my blood test forms inc my new GP’s details to receive my blood results by return post a couple of days later.
My hospital rheumy Dept does not accept detailed phone calls…..you just ask for a call back….then when someone does phone…..they never know any answers…so a round robin scatter approach letter seemed the answer ….& it seems to have worked.
Might try that then. I have had a f2f with rheumy, Immunology consultants and of course biologics nurse also had to have a f2f with GP nurse practitioner and I’m 100% that their records have been updated and are correct so no chance it’s just an address thing. When I think about it that’s lots of F2f appointments I should thank my lucky stars for that but I’ve had to wait up to six months for them so perhaps not so lucky. Haha.
It’s amazing how effective the printed word can be…especially when you show how many people have been cc’d.No one wants to be left out of the loop….so they all get on it!
Crafty…but it usually works…just one letter printed xxxxx times ..then a walk to the post box…..I even got a Complement Slip.
I knw this might seem daft but due to all these issues can the RA team not get the drug readyfor collection at the hospital your RA team are at, instead of a delivery as there has been so many issue to cut out the middle man based on all the issues you have had? I have just emailed my RA team to say do they need to put a new order thro with the same company you have as they have not booked me in for a my next delivery yet and giving myself 6 weeks to sort!
Yeah I would love to cut out the middle man and wish I could because I don’t have much faith in sciensus after phoning them and also live chat with them today got the impression they were a bit hung up by the system but didn’t give a monkeys either (computer says no attitude) I was virtually pleading with whoever it was to sort it out waste of bl++dy time. When the nurse helpline opens again tomorrow I will hang on redial until I get through and see what I can do. My consultant has already copied me in to an email for the biologics team to ‘SORT IT OUT NOW’ haha if he can’t do it I’m not ever so hopeful.
You would think so with it being an oral med/tablet wouldn’t you? It’s not like it’s a refrigerated syringe coming to Leics that takes space too. I think hospital won’t want to be an intermediary though to any patient in this way to hold meds and will say it’s directly from healthcare company to the patient. x
Yeah we all know that nurse speaks to pharmacy at the hospital they then contact h@h or whoever who then after they finally get the prescription order the stock and arrange for delivery most of the communication system is outdated the nurse sent a FAX to my GP with my results the other day are we in the 1990’s
I was just thinking maybe just maybe your RA could help on this first dose. It is so old fashioned I asked to send a letter to my GP and I have to post or drop it in they wont allow me a link to send info or an email. Just seems so slow. Almost back to carrier pigeon methods x
Yeah no one ever shares information digitally always send letters from hospital to GP which I have to say they don’t always look at. I’ve asked so many times to share relevant info between hospital and GP to keep them in the loop and have signed umpteen forms allowing my records to be shared has it ever been done nope. Do I ever find out my results nope usually even when things are pretty urgent as they have been before I’ve been shipped off two or three days later to A&E by a worried GP lol. I have to say I miss not working in pathology because at least I could keep track of it. I even have an app so I should see results but hospital don’t use it and GP doesn’t update it so no point having that either. At least I can order some repeat prescriptions online at least that seems to work unless they decide I need a review but it’s usually stuff I cannot live without as I have a stoma due to bowel cancer in my 30’s how can I do without those supplies ? Oh right on my soap box tonight haha 😂
I’m also in Leicestershire. Ring the PALs complaints department stating dates & names of people you dealt with at the hospital. They are usually very good at sorting problems out. Good luck.🍀
Awful 😡As someone else said…..email Patient and Liaison Service at the hospital. They all have them. They have been brilliant sorting stuff out for me. Do a search on hospital site for email address or ring hospital and speak to them.
Send a copy of this word for word to your mp with copies to your gen pract, your regional health authority and anyone else and send them recorded delivery. You deserve better than this. This is incompetence on their part and needs to be corrected. Con amore Bx
Yeah not a good situation but I’m fighting back and will use my MP etc as a last resort if I don’t get anywhere I have done in the past when I’ve been at the end of my tether not quite there yet but close. 😂
Just a thought, I have had a lot of trouble with Sciensus of late. But I managed to sort it out.
I think that Sciensus are in a lot of trouble at the moment. Read the CQC Report at the bottom of their website. It is for HAH, it is the same Company, just change of name and website.
My 6 monthly prescription was sent to them from Rheumatology on the 7th September, I had used the Sciensus chat line four times until the 24th September. Four administrators said they had not received it. Rheumatology said they had forwarded it.
So I telephoned Sciensus, instead of going through to track and tracing, I went to the fourth option 'Other'. The person who answered said that my prescription had been at Sciensus since the 13th September and offered me two deliveries the 29th September and 10th October. I had been without medication for 10 days.
Good luck in sorting your medication out, I would think like mine your problem is with Sciensus.
Yeah you’re probably right have had issues in the past with h@h and getting prescriptions. I don’t want to resort to shouting at some poor sod down the phone who’s perhaps not at fault but think you’re right sciensus are getting a lot of bad press atm quite rightly.
Try your rheumatology consultant's secretary - if Sciensus is not working for you it's really up to the hospital ordering system to sort this out - and your rheumatologist should have the duty of care here, to see that your treatment plan is working - so sorry you've been let down ,fingers crossed for you
Hospital consultants' secretaries are overworked ( you might have to leave a voicemail and wait for a call back)and underpaid - so keep them sweet! When you get to speak tell her (or him) how desperate you are and how much you'd appreciate it if they can help you in your difficult situation, as you don't know who else to turn to. That should get them to either email your rheumatologist urgently with your message/your predicament, or even have a word with them if they're around . Cry a bit. Leave the guns blazing stuff to one side. After 26 years of RA, and loads of orthopaedic surgery, I've found that consultants' secretaries of all specialties can be very helpful - they can sometimes be defensive as they often get a lot of flack/anger from frustrated patients and are under pressure from the doctors. Get her name. Tell her how helpful she's been. Everyone working in the NHS is struggling currently and everyone likes to be appreciated!
I used to work for the NHS and definitely know the pressures on staff and departments I wouldn’t dream of ever being rude to them I mostly creep and crawl and I always thank them for their efforts on my behalf having said that I do know that not all staff in the NHS work hard or give a toss I’ve met a few and worked with them too. Although I’m saying I will go in all guns blazing I know I won’t not in my nature but can still get my point across if I happen to find a member of staff who listens. If I think about the terrible errors that have happened in the past you wouldn’t think I would give two hoots but I do I would like some respect and will definitely treat them as I would wish to be treated. I’m all bluff but sometimes getting my husband involved has more sway which annoys me so much only coz he’s a man also annoying but I do like to solve my own problems if I can. I don’t have much left that I can do for myself.
sounds like you have all the necessary skills and strength to deal with this even if it feels like you've no resources left at the moment - I wish you all the best to get this sorted asap - good luck
Thank you I’m sure in time I will hopefully look back on it and shrug it off. I’m sure that it’s worse coz I’m pretty poorly with a chest infection and haven’t got the patience I normally have. Hey ho tomorrow is another day. It was hard enough for anyone to check my sample results which had been flagged up as needing urgent attention and they wouldn’t have done that had I not chased around all day. But got there in the end and will probably on this too.
I can really believe its your first infusion Leics because last week was my first infusion in three years and that one's now gone wrong. I had the first part then was told by rhuemy nurse in March this year, when first dicussud that it would be every two weeks fir a couple of weeks, then every 6-8 weeks. 'Oh, I thought they must' ve changed it? So I was very surprised to have a call from the sister at the PIU unit saying, 'Where you expecting to come in today for an Infusion. I said no I was a bit puzzled though by you telling me my next one was 12 November but I just thought it must have been changed. The rhuemy nurse told me it would be every fortnight at first. She said we'll the rhuemy nurse has informed the pharmacy, but not you or me and its there. First of all she checked with the pharmacy to see if it had come in whilst I was one the phone, she then said its come in so I was going to go in today at 12, but I hadnt no bloods. She then said I'm really sorry its there but it's not been signed by the rhuemy nurse so we can't issue it. I've had to let my rhuemy no and I told her that, but I won't hear for a few days from them. Sorry I can't really be of any help, but I just wanted you to know I'm with you on the issues side of it.
Oh that sounds awful what a cock up bet you’re fuming I know I would be. Mine are just tablets but I’m supposedly not on the system with sciensus and until they get a registration form I’m going to get no where. X
Yes the PIU nurse rang me back and it's now rearranged for next Fri. Haven't been on my meds for 3 weeks because of injections coming up. Have now had to contact the rhuemy again to say do I go for bloods? Plus the fact that I may have to cancel my flu vax again when it's already been changed once! My head is spinning.! 😊
Sciensus are a delivery company who used to be called healthcare at home. The hospital has an agreement with them to deliver biologic therapies and other drugs. They’re prescribed by the consultants at the hospital then prescription goes to sciensus and then they’re delivered to the patient. So supposedly an easy system bit like your local pharmacy delivering your repeat prescriptions. Wish it was that simple obviously it’s on a much larger scale. I dread to think how much it’s costing to do that if I could I would pick up my meds directly from the hospital but I’m not allowed.
Yes I get metho and sulphazaline delivered as normal through pharmacy. The docs are trying to get me off infusions and go on the home injections, but I'm reluctant to do that, so I go to hospital.
Your story here is exactly why I cant be A***d to even think about starting the process of trying to get seen by my GP who knows nothing about Stills Disease and who will do tests that come back negative for months before referring me to a rheumatologist who may not have heard of Stills either.Incidence of Stills is rare and 40+ years ago I was lucky to have a consultant at what was then new Addenbrookes who did diagnosis it after a few months.
Anyway that’s my rant, not as good as yours but it does help to get it off your chest doesn’t it 😉
Absolutely I think quite a few of us have been there too. I had a rare form of bowel cancer in my 30’s and were it not for my and my husband’s persistence I wouldn’t be here now. My mother in law had polio as a child now in her 80’s she’s struggled all her life with these problems too. Doesn’t help to be ‘special’ does it but there again if you can educate your GP by letter or email and ask for them to update your records by scanning info onto the computer it may help worth a try but I’m terrible at seeking help before I’m in a bad way would sooner pull all my teeth out than battle with them so I get you 🤦♀️😂
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Limbo
Sciensus Arghhhh
Sciensus failed delivery 
coming back up for air
Rant coming re: chest infection...............
