Struggling to get test results back

Ldyalb

I finally had my ultrasound scan of my hands 4 weeks ago this coming Tuesday. My last Rheumy requested that my GP organise one in Nov last year... (long story but it's only just finally happened).

I had the same procedure 2 years ago, it took 5 mins and nothing was there. Was diagnosed with Fibro and HMS. This time it took 20 mins and he kept taking screenshots of certain joints so I think something has been picked up. I asked the Dr who did the scan when I would have the results. He said he'd have a report with my Rheumy within a few days. As the Rheumy referred me for the scan the results would go to him, and not to my GP. The Rheumy would then write to my GP with the results and organise a follow up appointment.

2 weeks ago tomorrow I'd heard nothing and my GP didn't have the results so I rang the Hospital to chase. My Rheumy's secretary told me she had my results and would pass them on to my Rheumy later that day. I asked when I would hear back and she said 'end of this week, or early next'.

I didn't hear back so I rang up again on Friday. She then said that my results had been removed from the shelf and had been sent elsewhere accidentally. She said she'd get hold of them for me and give them to the Rheumy. I asked when I'd hear back, I'm hoping to start job seeking soon and want to know if I have arthritis or not. Esp as I've got loads of disabilities, under investigation for Asperger's, also under investigation for a defective bladder and have Dyspraxia, Fibro and HMS plus others. I don't want to take a job, only to then have to add another disability to the list - I want to know exactly what is wrong.

She said that my Rheumy is off on his Hols around the 8th August and she'd try and get him to see my results before he leaves if possible. She also said that the results should also have been sent to my GP as well as the Rheumy - so they should be able to fill me in in the interim.

I don't know what to do. I'm so angry, I think the hospital have messed up and are trying to deflect blame to my GP's surgery. My GP and his staff have checked numerous times - they simply do not have the results. I am going to see them again tomorrow and update them and see if they will chase the Hospital now, instead of me having to do it.

I've never wanted to make a complaint before but I'm angry. The scan was a month ago, it's not much to ask that my Rheumy would have seen them by now. I suspect the Hospital may have lost the results all together. Does anyone know where I should go from here? I just want my results

MrDJ

Hi
ultrasound scans are normally done in the xray department and if yours is a large hospital it should have a digital PACS system which means your scans will automatically have be sent to the PACS even before you even left the room so can be viewed on any computer in the hospital.
at my hospital ultrasound scans are reported there and then before the next patient is brought in to the room so i cant understand why its taken so long.

you have every right as a patient to ring the xray departments secratary and explain your gp has still not received the results and if like my hospital they will be faxed to the gp that same day.

Ldyalb

That's a great idea, will try the X Ray department tomorrow if my GP still can't find anything their end.

It's not a massive Hospital but it's large enough to have small departments for disciplines you'd find in any large Hospital so hopefully they do have the PACS system.

Even if it's going to take a while to get the Rheumy to review them hopefully I can at least get a copy to my GP to get some idea of whether it's normal or abnormal. If it's normal then we can move on, knowing I have a tendon problem, if not then at least we know it's most likely Arthur.

barbara12

Hi Ldyalb
My hospital trust is the same Im afraid, like mrDJ says you must ask for them and make it know how annoyed you are.
This will happen now and then but shouldn't be the norm
You take care and I hope you get them soon, one thing I always do is ask to see them, and have them explained to me x

Ldyalb

Quick update, just spoke to a lovely lady at the X-Ray department, she was able to look at my results on the screen and confirmed a copy was sent to the Rheumy, but not to my GP. I need to ask my GP's office to ring her and they'll fax a copy across to them.

So I think it's a lie about 'oh someone's sent the results elsewhere'!! They're on a comp screen for them to pull up... No idea what's going on with the Rheumy! I wasn't impressed with him when I met him tbh, he was quite dismissive, esp. compared to my first 2 Rheumy's I saw in London in 2010/11.

But my GP is excellent and I would trust him to be able to interpret the results to some extent for me. He spotted my symptoms pointed to PA asap.

I'm going to ring my GP's surgery now, hopefully it can be sorted out soon. This potential Arthur saga has been ongoing since early November '11 and I just want to know now because something's deffo wrong in addition to the Fibro and HMS.

Pain in the backside the whole thing lol!

Ldyalb

Update:

So I spoke to my GP surgery, they agreed to ring the Ultrasound folks to request a copy. They soon rang me back and said that the X Ray department, can't and/or won't share the results with my GP. Only my Rheumy is authorised to see them, and they sent them to him a month ago.

Surgery said no more we can do, ring the Rheumy's secretary again.

Luckily I got hold of her shortly before she left the office. She said the hard copy is still missing, but she's requested that whoever has them by accident send them back to her. I explained I'd spoken to the X Ray dept and she still insisted they should have sent a copy to my GP a month ago... she said she's requested a green card to allow her to see the electronic copy of my results.

Rheumy does his admin on a Tuesday, but is away next week on hols. She said with luck tomorrow she will either have the hard copy back, or be authorised to print off a copy of the scan to show the Rheumy. If he has time he'll review them and send me a letter, maybe copying my GP into it tomorrow. If not it could take weeks yet.

I'm exhausted from it all. I just want to cry - I just want to know what's wrong with me. I'm the patient, I have a right to know. Also, I just don't see why my GP can't be given a copy. He's my primary healthcare professional!

The whole thing is farcical. I'm sure I'm being fed some porkies somewhere along the line. I have an appointment with my GP a week tomorrow. If the letter still hasn't come by then I'll have to ask him to get involved. I suspect the Hospital may be more pro-active if my GP spoke to them, rather than his secretarial team. But who knows!?

My boyfriend's parents both work for the NHS, one's a Nurse, one's a manager. They're the other side of the country but they've given me details for PALS to make a complaint.

I'm beginning to see now why his Dad told me to go private!

On a non arthur note I'm having a terrible time with HCPs atm. I've had a bladder problem since I was born 24 years ago last month. As a child Drs insisted it was Psychological, they wouldn't even physically examine my problem. Even when a Child Psychiatrist declared me mentally sound. In the end it improved as I got older (still, I was 19 before I stopped wetting the bed). I just got used to living like that. My boyfriend said he thought my bladder was overactive so I saw my GP earlier this year. My GP who is an absolute star organised a bladder scan and uroflow test. Turns out my bladder is defective and always has been... my body retains large amounts of urine. This can cause kidney failure and ill health... I'm having two catheters up me next month for further tests and will probably need to self catheterise. I also had to pee into a jug for 4 days last week and measure my fluid intake and output. On one day I pee'd out over a pint more than I'd drank :shock: . Still, only took 24 years to find out that what my parents and I insisted all along was right - I do have a physical bladder issue.

Secondly I'm under investigation for Aspergers. I was referred to a mental health centre. My GP said he wanted me to see a Psychiatrist. I've been there before for Counselling - they do a quick screening appt with a mental health nurse and then you get referred to the appropriate person. So a few weeks ago I saw a 'Psychological Wellbeing Practitioner'. She basically said she suspected I have an eating disorder and Social Phobia (trust me, I don't. I'm a lacto Vegetarian (no meat, fish or eggs but do eat dairy) and I'm 7lbs overweight. I'm not starving myself and eat reasonably healthily, I'm just fat from being mobility restricted). She then said that they don't diagnose Aspergers but she doesn't think I have it as she met someone with it once and I'm nothing like them .

My GP was fuming when I told him (as well as highly amused by the stupidity of her comment) and is raising a complaint and telling them to send me to a Psychiatrist as requested. I'm prepared to bet the person with AS the lady I saw met was male, and women can present very differently from male Aspies.

Sorry it was long, I just needed to rant before have my healthy meal of pasta bolognese :P

barbara12

Hi Ldyalb
Dont you dare apologise for having a long rant, it will do you good to get it all out.
Has for the hospital , you are right they do get up to all soughts of tricks, I have been on the end of a few of them.
You have so much going on its just not fair the way you are being treated, have you tried to get in touch with pals, I have not tied them , but quite a few people on here have had help off them.
Just a point depending on were you live they may be called something else.
Wishing you well with everything xx

MrDJ

what a load of bullcrap. sorry but thats unbelievable.
as you said your gp is your primary care and as far as i know they normally always get a report of any test or exam you have as they are required for your life records.
if someone has lost the report this is a breach of the data protection act.

as i said before, if the hospital has pacs then the films will be computerised and instantly viewable. the report should be on the same screen.

you shouldnt have to do this but as the patient you can apply to the income generation office in the xray department for a cd disk of your films and reports. the office has to get the authorization from the doctor that requested you to have the last exam but you can request for all your xray/ultrasound/mri/ct scans to be put on one disk at a max charge of £10

Ldyalb

My Father In Law sent me the details for PALS at my hospital, will give them a ring tomorrow and seek advice. I'm hoping they can help, even if just to note down how badly I've been treated!

I feel I'm getting bovine excrement from the Hospital tbh. I think there's been some sort of balls up and they're covering it all up. I suspect my Rheumy just forgot all about me. They still haven't arranged a follow up appointment with him and I saw him 10 weeks ago.

I'm tempted to queue up on Weds morning to see my GP. Stupidly my GP surgery only offers same day appointments to people who queue up from 8am (it opens at 8:30, surgeries begin at 9am). If you don't queue up you usually have to wait 3 weeks. I book mine online in advance as issues nearly always come up. On weds they only open 9-11 so the queues are shorter - most people queue on Tues/Thurs instead.

I don't think my surgery have told my GP any of what's going on. He's already kicking up a stink with the PCT over the AS issue and I think he'd be keen to help me with this. But I feel awful taking up an appointment just to ask him to chase this, but I feel I may be faced with no choice.

I think the Hospital must have that PACS thing as the lady I spoke to from the Ultrasound dept was able to pull my notes up asap. She also said it should be on the computer system. I just don't understand why they won't let my GP have a copy! Surely if it's taking a month, potentially 2 months, depending on the length of the Rheumy's upcoming holiday, and time to sort it out once he's back, for the Rheumy to see my results it's a good idea to let my GP have a gander at them in the interim!?

I may well have to resort to requesting a copy and stumping up the £10 - I guess it just then depends how long my Rheumy fancies taking before he responds to authorising the request.

I definitely feel better for a rant. I feel I'm trapped in an episode of Fawlty Towers but no-one's laughing! Fingers crossed they'll sort something out tomorrow and I'll hear soon but I'll definitely be ringing PALS for advice and to complain in the morning anyway. Hopefully they can tell me why the X Ray dept is refusing to share my results with the people I want them shared with, whilst managing to send them to the wrong people as well!