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Delayed communications - this is starting to worry me!

(38 Posts)
Luckygirl Thu 10-Mar-16 14:48:28

I saw a neurologist in a hospital over an hour away in November because of my balance problems. He already had a previous brain scan there (normal) and ordered a full spine MRI which happened in January, since when they have sent me an appointment for a CT of thoracic spine on April 1st. I have spent much time trying to chase up the consultant to find out why they think I need this - what have they found? - what are they looking for?

His secretary is lovely and pleasant and has had the letter to me and the GP all typed for the last 3 and a half weeks, but she cannot send it till it is signed. Every time I ring her she says it has not been signed yet.

This morning a letter arrived from them and I thought - hooray, at last! But no - I opened it and it is yet another appointment - this time from the nuclear medicine department for a full body scan (with radioactive injection) for March 23rd!

Having worked in hospitals all my life I am beginning to think the worst, as I know these scans are often used when looking for metastatic tumours.

I have tried the secretary again, but he has still not signed it and I fully understand that there is nothing she can say - I feel a bit sorry for her really. But it does not seem reasonable that I am being called for these investigations without my knowing what they have already found and what they are looking for. I have left a message with my GP asking if she could possibly ring and they might tell her what is going on. I wish they would tell ME - it is my body!

Yogadatti Mon 14-Mar-16 14:37:23

Sorry but I would be upsetting the consultant, the secretary, the GP practice and the hospital that was doing the scans by now......one thing you may not have tried...has the hospital , consultant etc have a Facebook page or Twitter account..??...I guarantee that if you can complain on line for the whole world to see something will happen quickly. Complaints going viral get the response an individual cannot get any other way these days sadly!

Elegran Mon 14-Mar-16 14:43:03

No way should you cancel the bone scan. You would then go to the end of the queue and have the same wait over again, or even longer.

The scan is for your health, not the consultant's. If you don't receive that letter by Friday afternoon - or perhaps by Friday morning, we all know that everyone likes to get off early on a Friday and they could all have left the office - get on the phone and start throwing your weight about. You are the patient! the customer! and the customer is always right!

If necessary, burst into tears and say you are so worried and scared about why they are sending you for this test, because it has not been explained to you, and you have been waiting for four weeks for more information, in spite of being promised a letter.

Luckygirl Mon 14-Mar-16 15:10:09

Thanks for your advice everyone. I do not wish to cancel the bone scan and realise that I would go back to the bottom of the list, but I am not happy about having it if I do not know what it is for. I will wait till Thursday afternoon before ringing again - our post does not arrive till after 2 pm, so if I wait till Friday then it is likely I will be too late to speak to anyone at the hospital.

I am also concerned because, even after these two new scan appointments, I will probably finish up waiting another couple of months before I know what is going on. It does feel a long time!

All I can do it sit tight and wait - the only other thing I can think is to go to the GP and ask him/her what they think, but I probably won't get an appointment there till the end of the week. Big sigh.

bookdreamer Mon 14-Mar-16 16:04:54

As an ex medical secretary who has just retired I would say that the medical secretary you are dealing with is being very very unhelpful.

I would never have left somebody hanging for 3-4 weeks. I would have found the consultant on call, go armed with the patient's notes and ask him to look at the letter and sign it. It could be faxed then to GP surgery.

bookdreamer Mon 14-Mar-16 16:06:33

And I think the GP surgery is not being forceful enough. Perhaps the GP could ring him/herself.

Luckygirl Mon 14-Mar-16 16:25:36

Thanks bookdreamer - I rang the GP surgery and asked if one of the GPs could make a doctor to doctor call in order to unlock this situation. I left it with them and what they did was to ring the secretary, which was what I have been doing. I am fairly new with this practice and don't want to get a name for being a pest. I can only think that I might try and book an appointment with one of them.

It is 10 weeks since I had the original scan on which, I presume, the decisions about these further investigations are based; and at least 4 weeks that I have been trying to chase it all up.

It sounds as though you were a really good medical secretary with the feelings of the patient foremost in your mind - well done!

Luckygirl Wed 16-Mar-16 17:30:07

I have just been to my GP who agrees that the communication is terrible and that I cannot just go for a scan with no idea what it is about. She has arranged to chase it up and to ring me tomorrow. Fingers crossed.

grannyqueenie Wed 16-Mar-16 18:20:06

I've not looked at this thread for a day or so, that's awful that you're still not sure of what's going on. It's a fine balance isn't it between being insistent then being labelled stroppy on the one hand and not pushing enough for answers to perfectly reasonable questions on the other. Let's hope your GP galvanises into action now and gets you some answers pronto!

Luckygirl Wed 16-Mar-16 18:24:16

Thanks queenie - I appreciate your good wishes and also hope that some action will appear. My GP was very clear that it was not acceptable to ask me to have these investigations with no idea of what they are for.

grannyactivist Wed 16-Mar-16 18:29:46

Lucky - I admire your patience and hopefully you're on the way to getting some answers.

Having been in a similar situation with my mum last year I was calling the consultant's secretary twice a day; each morning I told her I would ring for an update in the afternoon and each afternoon I told her that I would call again in the morning. I apologised for being a nuisance and explained that I understood she couldn't give me information herself, but that I needed to have it so that I could make necessary arrangements as quickly as possible. Three and a half days and seven phone calls later I spoke to the consultant - and thereafter he always took my calls.

Do feed back your experience because it will be happening to other people too. There's obviously a glitch in the system.

Luckygirl Thu 17-Mar-16 17:23:42

Well - the GP did manage to get the information - I do not know how.

Apparently there is a "signal change" on the MRI at T4 in my spine. They consulted the radiologist about it and he recommended that I have the thoracic spine CT and the whole body bone scan to try and decide what it is. So.....still don't really know what it is about, but it sounds as though it might not be something very bad. GP recommends that I have the scans because the radiologist has recommended this.

So - in some ways I am no further forward, but the GP thinks it should be checked out, so I will go and see what happens. I don't feel quite so worried about it now.

Elrel Thu 17-Mar-16 17:45:12

Glad the situation has improved for you but it just shouldn't have happened. ?