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Is there a results crisis? Time for action?

7 May 2019 09:29

In recent months I've felt an increasing sense of frustration when reading stories about how long patients have to wait for results and even in the manner they're presented with them.  This delay pays a heavy toll on the patients. 

I think that no one on a cancer pathway should have to wait longer than 2 weeks for results of scans, biopsies, etc, and that no one else should ever wait for longer than 4 weeks for routine results. 

I think that our politicians are generally unaware of this situation, which I believe is becoming a crisis. Am I alone in my misgivings?  Is it now time for us to act, and if so, what should we do?  

Please can you share your thoughts on this. 

Is there a results crisis? Time for action?

7 May 2019 09:55 in response to telemando

Here, here ....

The trouble with these results and the overwhelming emotions involved, can not be felt, untill it happens to them ... everyone else can empathise or imagine ... but in a lot of cases , where the patient has little support, they feel so lost .. like in a huge maze that no one is helping them through ...

I know everything is stretched ... staff and Drs and oncology teams are doing the best they can under pressure to get the right result and plan of action if tests are positive .. most are amazing, and how they do this heartbraking job , day in and out, I can't imagine ... 

But oh my, if only those that could change the system, knew how terrifying the wait is .. they would put something in place .. esp hard when that patient has young children ... looking back over my almost two years .. the biopsy/ the radio active scans ... the masectomy  ... the emergency op a few hours later .. the draining of fluid twice ... the op a few months later for two more lumps that were calsification ..

Which was the hardest part ... the waiting for results each time ... but I was so lucky to have the most amazing family that held me up ... but yes telemando ... if we could change one thing on here, I'm with you ... someone to give everyone waiting,  a number to call if they need it ... a safety net ...

Here's to kicking cancers ass ... Chrissie x

Is there a results crisis? Time for action?

7 May 2019 10:02 in response to telemando

Hi telemando I agree wholeheartedly there are a lot of people waiting a lot longer than TWO weeks, especially when some C are fast spreading, I know myself from finding my C to starting treatment was over FOUR months alot can happen in that time. I would think that if a politician was ill they would be sorted very quickly, (mind you they probably go private)..

Billy 

Is there a results crisis? Time for action?

12 May 2019 13:08 in response to telemando

Hi Telemando, I agree.  I've had a three week wait so far for CT scan results and my consultant will only chase for them when he returns from annual leave on Monday.  Possibly another week or two wait by the time the results are in and my appointment is scheduled with the consultant.  All the while this mass could be growing and, if something sinister, spreading.  So scary.

Is there a results crisis? Time for action?

12 May 2019 13:35 in response to saldo5

I completely agree. I'm in a similar situation. I don't know on what planet a 6 week wait for results is considered acceptable. 

Is there a results crisis? Time for action?

12 May 2019 20:32 in response to telemando

Hi telemando I would have thought there would be a lot more people on here by now I can't understand why not, 

Billy 

Is there a results crisis? Time for action?

12 May 2019 20:57 in response to Billygoat

I waited a month between each test and biopsy. I don’t know if the appointments were set up that way to deal with the slowness of the labs or where I went were just slow anyway. Probably a combination of the two. 

Is there a results crisis? Time for action?

13 May 2019 07:57 in response to telemando

Morning ...

There was a thread on here l read over the weekend .. a lady who had first test and given an urgent refural for more tests .. forget two weeks... forget one month ... or two months .. she got one for three months ... hang their heads in shame ... 

How to go about getting change ... l dont know ... but if anyone knows a way of getting telemando thread to someone who just may be able to do something ....

But it needs everyone who has this problem to stand up and put their story across too ... good people can make a change .. l know the two weeks may have a day or two delay ... but weeks / months must change ... Chrissie  x

 

Is there a results crisis? Time for action?

13 May 2019 09:59 in response to Chriss

Hi Chrissy. 

I think the first step is to establish the scale of the problem. I hope this can be done by a series of targeted Freedom Of Information requests sent to the appropriate NHS foundation trusts, etc, asking for summary statistics of how long it takes to turnaround different types of result and what are their service standards. This will require planning: first to identify the particular trusts, etc, to target with requests, and second to formulate the most appropriate wording for the request(s). 

At the same time, it will do no harm to gather more informal stats and horror stories on this thread, and maybe also find some volunteers who'd like to join in and help.

I am a complete novice at this, so I'm very much in the dark on the right way to do this sort of thing. 

Is there a results crisis? Time for action?

30 May 2019 10:24 in response to telemando

Hi telemando. I am 9 month post radiotherapy for tonsil cancer so can feel qualified to answer a bit of your question. I too freaked out when put on the cancer pathway 14 May last year and was frustrated by the waiting. Hey I wanted to shout if you think I’ve got the big C do something about it ! Our daughter works in governance for n h s so I asked her what were the protocols her reply. Was as follows nhs guideline s laid down by government are  patients shoukdcstart treatment no later than 62 days from original referral date. lol and behold my radiotherapy started on 16 July .the nhs targets are met in 95 % of cases with the trusts who fail receiving hefty fines .totally agree if it was a politician they woukd be done n dusted in less time privately I feel sure. But us mere mortals have to play by the rules 

hope thus helps

 

hazel

Is there a results crisis? Time for action?

31 May 2019 02:31 in response to telemando

Yes, agree wholeheartedly, the toll it took on my mum having to wait over 4 weeks to be told she had cancer then the action plan was another lot of investigations within the next two weeks.. The waiting she said was unbearable

Is there a results crisis? Time for action?

11 Jun 2019 15:06 in response to telemando

hi everyone, i agree the waiting for results can take its, toll on one,s health even further. i myself had to wait fweeks for scan results .this is not acceptable! something needs to be done to stop the suffering.

Probably if we get a petition signed and send It to the health minister or whoso ever is the appropriate person  ( PEOPLE POWER IN NUMBERS) may be a way foreward i think.Lets hope we get some luck..

 

Is there a results crisis? Time for action?

11 Jun 2019 15:30 in response to whiskerbumper

Hi ..

I think there should be councilling for those waiting for results .. just a phone number to call for reassurance or just to chat about how scared they are .. I had a masectomy.. 3 days in hospital ... blood transfusion... emergency op at 3 A.m with a bleed .. 2 drainage of Brest.. one op to reopen and take out 2 calsification lumps .. and more ...

The worst thing out of everything was that first wait for diagnosis and wait for op ... our thoughts are overwhelming... just a friendly voice would have ment the world .. I did call McMillan and that really helped.. having a cry while talking to a nurse .. but felt so much better after .. but McMillan can't be there for everyone .. and some don't want to be a bother .. but if only everyone had a number .. 

Rant over ... here's to everyone kicking cancers butt...  Chrissie xx

Is there a results crisis? Time for action?

15 Jun 2019 12:24 in response to telemando

One way of drawing attention to this issue is to start a petition. Go to 38 degrees.org.uk - set one up there - it's free & easy & they have a lot of success. If the petition gets 100,000 signatures ( easier than you might think) the aims of the petition have to be debated in Parliament.

Hope this helpts.

Is there a results crisis? Time for action?

15 Jun 2019 13:05 in response to purrfect

Oh how I wish we had one M P we could relate too .. they seem all wrapped up in their own ambition ... there's no t one that I could say l have any faith in ... the only word they seem bothered about now is BREXIT ... even if they debate it.. it will get swept under the carpet .. they should come on here and read all those threads that are scared witless.... coz of waiting .. every day .. and the two week rule was hard enough .. but now some wait a lot longer .. with no safety net to call ... 

They are the lucky ones that come on here or McMillan... but what about those that don't know about these threads ... cancer sucks .. but waiting for results is even worse ... sorry .. vent over .. but this is one thing I feel passionately...  now breath ... Chrissie  ; ((  xx