CT Scans waiting times

[Maria]

After my kidney removal in November, I saw my consultant on January 4th, stage 3, Fuhrman grade 4 tumour so I will be having a CT scan and bloods taken every three months to check for mets. He immediately sent an urgent request to the radiology department at Gartnavel for a scan appointment in the first week of March as I am due to see him again on the 23rd to go over the results.

It is now almost seven weeks later and I still have no appointment. We would like to have planned in a week on holiday in March but can arrange nothing until the scan date comes through. I have phoned twice and been assured that I am on the list for a "planned scan" but no explanation has been given as to why these appointments cannot be arranged with a decent advanced notice to patients. I will be phoning again on Tuesday if I have received nothing from them. I will not allow what happened last year when I nearly lost my life due to the constant delays and failure to deal with urgent requests.
What organisation finds it impossible to plan ahead? The answer is a poorly organised and incompetent one.

Does anyone else have this problem? My husband works for the civil service and they need advanced notification of holiday requests so we can plan nothing around the months scans will be due. Am I being unreasonable?

[Rose Woodward]

No you are not wrong to ask Maria - it seems we have to be "pro active" if we want things done - but then we are British and I don't think that comes easily.

We hear awful tales about lack of urgency, and awful tales about lax care, slow results .

We rail against it contantly, sadly in the end I think we just have to grasp it and look them in the eye and tell it straight - this is our life, our cancer, we may just be another patient but we want personal professional treatment - I have an American friend who says take the wind out their sails and next time you meet the Doctor instead of a polite handshake and the " I'm OK thank you " - give them a big hug, tell them how much you rely on them looking after you properly , tell them how you feel about not getting results quickly , ask whether they have enough staff to look at scans? If they say No tell them you will write about it to the Cheif Execiutive of the Hospital . If they say they have enough staff ask why you waiting XX days for results .

I expect others will chip in. I know Sandy had this problem until she took charge of her treatment.

It shouldn't be necessary but sadly it is !! Can I suggest you send emails instead of phone calls - get your Consultants Secretary's email address emails are traceable and you just keep at it until you get your answer - phone calls can be ignored or forgotten (?) .

I have a brought forward /pending file if I don't get an answer in 3 working days I write again - " Can I please have a reply to my email sent XXX" the next day it reads " Can I please have the courtesy of a reply to my email dated XXX cc'ed Cheif Executive, XXXXXX Hospital.

Why we have to do it I don't know but we do, and finding a way at the start will make it easier later on.

Rose xx

[Maria]

Thank you for your good advice, Rose. My consultant's secretary is very effective in chasing things down and always gets back to me quickly. It seems as though the Radiology department is so many hospitals are poorly organised as far as appointments and sometimes results are concerned. I don't understand why they can't pencil me in to the system say every 2nd Monday of the month every three months. I want to know how they organise the appointments and what is being done to improve this chaotic system. I won't give up until I get an answer that is logical!

[Sandy63]

Hello Maria, Sorry I have been away in Kent visiting my Mother. Rose brought your story to my attention. Like you I was totally frustrated with the nhs and how it didn't work for me. Initially I made a formal complaint to the PCT. The outcome of this was that I was given a named Consultant who I see every time I visit. This is so important as I was being given different advice from different doctors. Then last April I was advised following a CT Scan that I had a tumour on my Adrenal Gland. I was to be referred to the Endocrine Consultant. He sadly was very negative and really not interested. So I took charge. I did some research on the Internet and found that Southampton Hospital were excellent with Cryosurgery and Radio Frequency Ablation. I requested my GP refer me there and believe it or not within 4 weeks, yes 4 weeks, I had the procedure successfully completed. So successful infact that I have just found out that the Adrenal Gland is functioning and no longer require steriods. How good is that? We can go to any PCT we desire as our money follows us. So do remember if you are unhappy with the treatment offered then do look elsewhere. I will not hesitate to do the same again if anything else glows on a scan. I am a firm believer in surgery for my kidney cancer. I have had several operations. Since having my Nefrectomy in 2003 I have had a Lobectomy, an Adrenalectomy and now Cryosurgery Ablation. I am just not prepared to allow it to grow. Eventually of course I will have to resort to Sutent but in the meantime I am very positive and will not allow this odious disease to control my life.
Good luck my dear.

Sandy

[Maria]

Thank you very much Sandy. Your proactive approach is an inspiration. It is the only way because I know that I would have been dead by now if I had not kept up relentless pressure on doctors and appointment staff for the whole of last year. I won't go into it all again because it is now part of the past but it has given me the knowledge that it is in our hands, never to give up, always demand an explanation - in the nicest possible way and don't let them away with waffling excuses. I am unfailingly polite but very clear and not above explaining what the delays are doing to me in ways that would ring tears from a block of marble.

I have found that the secretary to the consultant is my greatest ally and friend. That is why I now have my appointment, phoned to me at 7pm last night, after the intervention of my consultant's secretary. I go out of my way to make myself a real vivid unescapably REAL human being, personalising each contact so that there is no way they cannot see me as just another "patient". We are fighting for our lives; we should not have to fight but that is how it is for now, so fight I will, all the way.

You and Rose are incredible women; we owe much to you.

Oh, the scan is now on the 15th March and I see my consultant on the 23rd March so fingers and toes crossed for me and don't fall over while you do it.
Love to all
Maria

[TinaJ]

Dear Maria
I hope all went well yesterday with your scan. I am thinking of you, and I am keeping everything crossed for you.
Hope you are ok?
Love & lots of hugs
Tina xxxx

[Maria]

Hi Tina, Thank you for thinking of me; it really does help to know that there are so many loving people around all praying and hoping for one another.

The scan went well. In and out quickly within half an hour of arriving at Gartnavel. The staff were lovely and considerate as I have found almost every NHS employee to be. My veins had pretty well all collapsed in hospital so I was a wee bit concerned about the contrast injection but my veins have recovered well and for the first time in months I heard those lovely words, "Oh good that's a nice plump vein" .

I am expecting my results next Tuesday when I see my consultant,Mr. Aitchison. I have been surprisingly calm about it all considering how annoyed I was getting about the delays in actually having a date for the scan. I have been telling myself that there is nothing I can do to change what is on the scan so let's leave the panic until there is something to panic about!!! I have taken the precaution of being fully occupied on a course on Saturday and Sunday, something for my CPD and a chance to renew my knowledge of NLP and Huna. That will keep my mind out of mischief.

I will let you all know as soon as I do.

With love and thanks
Maria

[TinaJ]

Hello Maria

I'm so glad it all went well for you. I think the waiting for appointments and having it done is the worst part. Garry hates going for scans but is alright once he's been in (if that makes sense!) I know what you mean though with waiting times, we wait for that appointment to come through the post and then it is weeks away,we need to know sooner, it all adds to the stress of it all.

We have got appointment tomorrow to see if they are going to start Garry on Everolimus. His bloods are doing funny things, alot going on apparantley, so we are keeping fingers & toes crossed. He has not been on treatment for about ten weeks now.

Glad your veins are behaving! you must of given them a good talking to before you went in!
You are doing the right thing with keeping positive and doing what you want to do, I admire you for that.
Keep strong and we are thinking of you. Next Tuesday will soon be here before you know it, and we pray for a good result

Lots of love & hugs, Tina XXXXX

[Maria]

Nothing - nothing - nothing. Nothing showing on the scans. Thank you, thank you , thank you. See the small fat woman with the enormous grin threatening to split her face, the Cheshire Cat reborn.

No more scans, no more bloods, no more doctors until July.

Hurrah! You can tell I'm just a wee bit pleased.

Now down to the business of drinking that champagne I tempted fate with by putting it in the fridge this morning and tomorrow I will start to take action on setting up a support group here in Scotland.

Much love to all of you and know that I am here for you on your journeys as you have been for me.

[TinaJ]

Maria, I am over the moon for you. What brilliant news. I hope you had more than one bottle of champagne???
What a huge relief, I'm just so pleased for you. I want to give you a huge hug. I'm sending one through the computer, here it is...............hug hug hug hug

Love from Tina XXXXXXXX