hospital mess up

scouting

So decided to phone hospital because I hadn't heard about changing biologic and I'm two weeks plus post finishing cimzia.
They didn't want name very important blood test in December because the lab doesn't do those test in holidays :shock: and they have been trying to contact me in an old number I've requested to be changed at least twice.
so have to have new bloods done tomorrow then wait for funding and pharmacy could be 5 weeks till new medication. I asked why they didn't send me the form or phone my home number or gp or next of kin but no answer. Lol.
I'm feeling worse every day and with no relief for a month my demeanour has plumeted to say I'm not happy would be an understanding. I've emailed pals abut it but I'm at a loss at the moment.
gxx

stickywicket

How painfully frustrating for you! As DD sometimes says, we do have to be responsible for our own admin these days and you have just discovered this the hard way. Clearly you tried to give them your new phone number but it didn't filter through and my guess is they are too busy to chase up people who don't respond to find out why they're not responding as one has only to look at the GP's noticeboard to see how many people make appointments then don't turn up. You are paying the price for them.

I hope PALS might be able to expedite things for you. Please let's know how things go.

dreamdaisy

I learned some time ago not to rely on clerical people in the NHS to do their jobs with a high degree of conscientiousness. Rheumatology is one of the fastest expanding clinics at my hospital and has been for years which is why I chase if I haven't heard. I know I'm important but I also know I am one of thousands of patients whom they deal with on a regular basis.

I hope you can soon get this sorted out - write to the unit with the full details of your hospital number, address and contact numbers because they have to act on letters so this useful info may actually make it into your records. I have a friend who was a rheumatology nurse and her most frustrating Helpline messages were the ones who said 'Hello, it's me Linda, ring me back as soon as you get this message.' At the time they had around 25 Lindas so, as a contact number hadn't been left, who was she supposed to ring? All of them? DD

scouting

Thank you.
It's just so frustrating that I will be completely Un medicated for the foreseeable future. Had my bloods today and on a positive note they were brilliant with my shy four year old who had to come with me.

Pals have said they will look in to it but she isn't sure if she can speed things up just help to ensure they don happen again. She was a bit perplexed as to why they didn't send the new blood form to me. As for the lab not dealing with those tests over the holidays it was one age hadn't hears before which makes me think the nurse forgot it the first time. So fingers crossed the results come back soon and they agree my funding quickly. Lol
gxx

stickywicket

My experience of PALS is that they're very good and will help if they can.

My experience of small children and haemotology clinics is that my two horrors loved seeing blood extracted from me, especially as the phlebotomists sometimes gave a them a large, unused syringe (minus needle) to use as a water pistol.

scouting

Well I'm nearly a month on and still no medication. Found out they lied about ringing the wrong number as my old number isn't on the records anymore.
Spoke to PALS and nothing. Apparently there was another delay in the doctor signing off for the application to go to funding. She said she was sorry for the inconvenience..I said it's not an inconvenience I am in constant pain, constant flaring and it's affecting me and my job so much. I'm bad tenoered abd so upset. I don know what to do. I phoned the rheumy nurse last week to be told it could take a month! Another one!! OMG she also said she would get me a prescription for steroids to help that was last Tuesday and still nothing.
sorry I'm at my wits end and don't see an end. I don't know what to do.

Many thanks
gxx

Slosh

What a nightmare. And how terrible that you are being put through unnecessary pain and suffering. All I can say is that I am keeping my fingers crossed that things get rushed through for you now.

stickywicket

No wonder you're at your wits' end. Am I right in thinking you also have a small child to care for? I'd go to my GP. And explain what you've told us. At the very least GPs can prescribe steroids. (S)he might also be able to hurry things up for you. Good luck.

barbara12

I really do feel for you, these hospital are not very good at communicating, leaving you like this is rotten, I do hope they get moving now and you can get some help very soon, good luck I hope you get the funding...Im with SW I would see your GP for now...

scouting

Thank you. I phoned again today. Apparently funding has been secured and now it could be up to three weeks to get the prescription done.
Yes I do have a little four year old monkey who we are taking to disneyland on the 13th. So I think a trip to the gp for some strong pain duller and steroids. I really hope enbrel works because I don't want to go through this again. I think once this has all been sorted a formal complaint might be going in. The hospital is already in special measures abd this seems to be getting worse.
Gxx

stickywicket

So, if you're going to L.A. on 13th and the prescription will take three weeks, presumably that means you won't have it until you get back. That will be tough. Are you taking a wheelchair? I did Disneyland a few years back with my grandson and, believe me, there's an awful lot of walking. And standing. Whereas, those in wheelchairs get a separate, much shorter queue. I'd have seen very little of it without my chair.

scouting

Only doing disneyland paris. Been loosing weight so I don't get stuck on any rides so I'm hoping that will help. I don't have a wheelchair but have crutches and some times use my hiking stick.
I'm a bit confused also as I'm sure I was told I need to be off steroids for four weeks before starting new medication. So what is the point of prescribing them. Gxx

stickywicket

Ah a much easier flight. Maybe crutches will be sufficient to get into the disabled queues but, if you have the chance to hire a wheelchair there then go for it and let your little one sit on your knee. I did that when mine were young. For the dangers of not doing so read Megrose's account of her recent trip to Edinburgh zoo on Chit Chat.

I don't know what the guidelines are re steroids and starting a new biologic but do ask and make sure you get it right or there could be further delays.

scouting

Thank you. We are doing the eurostar. Much better train station then airport.
that's what I was worried about. Will check with rhuumatology. I have a gp appointment Wednesday I will ask for some stronger stuff to help with pain and recovery. Lol
gxx

As5567

scouting wrote:

Thank you. We are doing the eurostar. Much better train station then airport.
that's what I was worried about. Will check with rhuumatology. I have a gp appointment Wednesday I will ask for some stronger stuff to help with pain and recovery. Lol
gxx

You will be fine starting a new biologic while on steroids, I've tried 3 different biologic drugs in the last year while being on high and low doses of steroids. Some doctors even prescribe steroids and biologic drugs at the same time if you're stuck in a big flare up, the steroids help things settle down while giving the new medication chance to work. Ofcourse the sooner you can come off the steroids the better but as you probably know coming off them isn't something that happens overnight.

I hope you're able to enjoy your holiday to disney!