Cancer Research UK on Google+ Cancer Research UK on Facebook Cancer Research UK on Twitter
Donate

Together we will beat cancer

Still waiting for operation date

14 Sep 2018 15:05

I am so frustrated, angry, unable to sleep and it is taking all my time to stop myself crying and I am not the one with the diagnosis of cancer.  My mum was informed on 7 August that she had aggressive, invasive bladder cancer and the only way to get this would be with an RC and if operated it was a possible cure.  When asked how long we was informed she would have her op in 4 to 6 weeks.  We are now still waiting.

Just contacted admissions to be told extremely busy, unable to meet cancer waiting times and it could be end of October.  It makes me want to scream.  I know I am being selfish and others are going through what mum is but this is MY mum and whilst we are waiting the horrible cancer could be spreading and she will have then no hope.

I have contacted PALS over a number of things (errors in administration, they sent her for an apt to change her catheter - she doesnt have one and never has just one of the things, then attended an hours outpatient apt with stoma nurse for her to turn round and say no point attending as she doesnt have a surgery date lol) so I may have to contact them over the length of the wait.

SOrry to ramble but I need to vent.  Thank you for listening.

Re: Still waiting for operation date

14 Sep 2018 15:39 in response to michelle18

Hiya Michelle, 

I’m really sorry to hear about your ma’s diagnosis and to hear that the docs are dragging their heels. I hated waiting for my operation, and wanted it over as soon as possible because as you say it’s the worry that it could be spreading when nothing is being done! I can understand how frustrated you must be, waiting is one of the worst things when you know is inside you and you just want it out. Unfortunately sometimes there just aren’t enough resources and time to help everyone in the time they should, but usually they push hard to get them in because I was told that my op was pushed forward because if they left it too long they got fined. I would definitely contact PALS again and just try and get some answers on what’s going on and then go from there? If you ever need support we are here for you, it usually becomes easier to deal with once has more information and know what your dealing with. 

I wish you all the best Michelle, 

Bex x 

Re: Still waiting for operation date

14 Sep 2018 16:08 in response to Bexi

Thanky you.

I actually work at the hospital and I realise the pressures they are under and I should be more understanding, but this is personal.

Just contacted admissions who say her paperwork hasnt even come through to make an apt for her op.  This was after them promising to push it through urgent on Monday

Re: Still waiting for operation date

14 Sep 2018 17:17 in response to michelle18

Yeh it's different when it happens to you personally eventhough you know how it is on the other side you can't help it. But after this time something must have gone wrong somewhere surely. Its not good enough in my opinion, I know you can only ask so many questions but I would keep bugging them until you get some progress from them. 

 

Re: Still waiting for operation date

15 Sep 2018 13:27 in response to Bexi

When I was taken in for surgery within 8 hours of seeing the surgeon he told me that the day before they could not find a patient to do surgery on so he had no work as they had not done the pre op assessments on the patients I could not believe what he had told me. They did my assessments there and then and I was in. I hope your mum gets her surgery really soon. Keep pushing and get a good relationship going with PALS 

Re: Still waiting for operation date

15 Sep 2018 22:35 in response to michelle18

Hi Michelle,

So sorry to hear about the hassle you are getting.

I may get shot down in flames for this but as a former NHS employee I have never had any dealings with PALS - not even when pushing a formal complaint about my son's sub-standard care (not cancer related). IMHO they are a complete waste of time. They are not independent and they usually report to the director whose service you are complaining about. 

You are not being selfish, you are simply acting in your Mum's best interest.  

Here are some things you might try. Contact admissions again and ask them to repeat their comment about not being able to meet the maximum cancer waiting times and then ask them for a statement to that effect in writing, either in a letter or in an email as you wll be raising the issue with your MP and your local councillor, then possibly the local press, as well as pursuing a formal complaint. NHS Trusts HATE negative publicity, especially when backed up by a query from an MP. In addition, local authorities have a role in overseeing NHS performance in their local area.

If you know which consultant is supposed to be delivering your Mum's care, phone their medical secretary, explain the situation, the stress that the delay is causing and say that your Mum would be happy to come in at short notice. 

Don't give up politely pressurising the Trust until you are happy with the response you are receiving.

It shouldn't be like this but I'm afaid that the old saying that the squeaky wheel is the one that gets the oil is all too true. 

 

Good luck

Dave

Re: Still waiting for operation date

16 Sep 2018 16:22 in response to davek

Spoke to admissions friday who said no date but new mums name lol. Spoke to medical secretary to say we need a date, promised to ring back. Never did. I have now contacted the general manager and he has agreed to see me. If mum has to wait another 4 weeks for her op it will be 10 weeks. Over double the cancer waiting time foe treatment. They never even offered her to have the op elsewhere cos they couldnt meet the targets.

They also said that they did the date of ops in order, when i originally spoke to admissions they said nobody was waiting, so where have these apts gone

Re: Still waiting for operation date

16 Sep 2018 17:04 in response to michelle18

That sounds promising - just politely but firmly keep the pressure up. They may try to hide behind the 60 day (GP cancer query referral to first treatment target). 

Good luck!

Dave

Re: Still waiting for operation date

16 Sep 2018 20:45 in response to davek

She has gone over the 60 day target. She wa originally referred in june

Re: Still waiting for operation date

17 Sep 2018 20:20 in response to michelle18

Good grief!

Re: Still waiting for operation date

18 Sep 2018 02:33 in response to michelle18

Went through this with my brother as well. I feel your frustration.  Please vent to me all you want. I had to fight to get my brother in to see an oncology doc while he was getting much worse. Was told the doc was on vacation. Really only one doc eh. I was so mad. I pushed and pushed . Keep trying. Sending you strength and love. 

Re: Still waiting for operation date

18 Sep 2018 13:08 in response to Littlespark

Thanks everybody for your replies.

Well, I dont know what next to do.  Spoke with the General Manager, who assured me mum will have her apt at end of October making it 12 weeks after diagnosis before treatment.  He cited that the department was extremely busy and could not cope with all the cancer cases, especially with the drive "blood in your wee" adverts.  Surley this shouldnt be allowed.

Just keeping fingers crossed that it hasnt spread.

Mum had a good weekend my sisters and i (4 of us) all got together as we live scattered about for the first time in 4 years - and as we discussed Xmas, mum said dont make any plans as she may not be here.  I just hate seeing her like this.

 

Thanks for listening.