John had his brachytherapy on 3rd June last year
We had a couple of appointments last year and we should have had another follow up in February this year but they cancelled that and re-made it for May 28th.
We have now received another letter cancelling the May appointment and they remade it for August 20th 2015
The last time John saw anyone was in November 2014.
If we're lucky and they don't cancel the August appointment it will be 9 months since John has been seen
It's not good enough. I have steam coming from my ears.
John has gone from being pretty laid back about the whole appointment thing to getting annoyed himself, so much so that HE is going to try and ring his cancer nurse to see what they can do. Very unlike him and I wish him well with it. I left a message for them on 23rd JUNE 2014 and they have never returned that call.
I rang the telephone appointments line and she said August was the earliest appointment they had due to clinic closures and I said it wasn't good enough. She agreed and said she would give me the Complaints Dept phone number which she did.
However, that number is discontinued.
I checked the hospital website and found a complaints number myself and eventually got through.
The operative was very helpful, has written an email and says she has spoken briefly to the Service provider manager who will get back to us today with a view to an appointment being made.
Am I over reacting? He seems fine in himself, the PSA is dropping albeit VERY slowly but at least in a downwards direction. (Last one was 1.6 from the original pre-op high of 6.3)
What has happened to our health service that they think it is perfectly acceptable to just cancel a cancer follow up appointment?
Edited by member 13 Apr 2015 at 16:14
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
John had his brachytherapy on 3rd June last year
We had a couple of appointments last year and we should have had another follow up in February this year but they cancelled that and re-made it for May 28th.
We have now received another letter cancelling the May appointment and they remade it for August 20th 2015
The last time John saw anyone was in November 2014.
If we're lucky and they don't cancel the August appointment it will be 9 months since John has been seen
It's not good enough. I have steam coming from my ears.
John has gone from being pretty laid back about the whole appointment thing to getting annoyed himself, so much so that HE is going to try and ring his cancer nurse to see what they can do. Very unlike him and I wish him well with it. I left a message for them on 23rd JUNE 2014 and they have never returned that call.
I rang the telephone appointments line and she said August was the earliest appointment they had due to clinic closures and I said it wasn't good enough. She agreed and said she would give me the Complaints Dept phone number which she did.
However, that number is discontinued.
I checked the hospital website and found a complaints number myself and eventually got through.
The operative was very helpful, has written an email and says she has spoken briefly to the Service provider manager who will get back to us today with a view to an appointment being made.
Am I over reacting? He seems fine in himself, the PSA is dropping albeit VERY slowly but at least in a downwards direction. (Last one was 1.6 from the original pre-op high of 6.3)
What has happened to our health service that they think it is perfectly acceptable to just cancel a cancer follow up appointment?
Edited by member 13 Apr 2015 at 16:14
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
The last time I had a psa blood test was in December 2014, I should have one every 3 months,
I contacted the hosptial who told me I had been dischaged, and was under my GPs care, no one had informed me of this
I contacted my GP in March and requested a blood test....after a number of calls , they told me they couldnt find the result and told me not to worry its not important but make an appointment to see the GP ( once again) and get a blood test form, (Friday)
unable to get a test on Friday and on Monday because they were so busy ! they only do 25 at a session, unless I trek miles to a hospital, decided not to.
Had a another blood test today (Tuesday) some four months since my last test, I hope I get a result this time....the NHS is in chaos IMO !
Edited by member 14 Apr 2015 at 12:05
| Reason: Not specified
User
Totally sympathise. This was also the rule rather than the exception during Neil's illness and put even more stress on us both during a dreadful time. I was listening to the radio last week and there was a man who had nursed his wife who had brain cancer saying, he, a complete lay person had been the one to co-ordinate care, and how wrong this is. I always thought the cancer nurses had a co-ordinating role but this wasnt the case until the palliative care staff got involved.
I appreciate the NHS is over stretched but sometimes I found the systems made it harder for people to do their jobs. You have to keep chasing these things up but it is far from ideal. Regards,
Fiona. x
User
Well, give them their due.
About twenty minutes after I spoke to the original lady, a service provider got back to me and said she had done some organising and she found us an appointment in June but would keep looking.
10 minutes later she rang to say she could offer us an appointment in May a week or so BEFORE the cancelled one.
I am just so cross. Now John has to go and get another blood test form from the GP, who will resent it because it comes out of their budget, and if they cancel again then the hospital won't know these result either, like the last one.
Still, at least we'll be able to see them and as long as it is still going down, no matter how slowly it's all we can hope for.
So frustrating.
Edited by member 13 Apr 2015 at 16:15
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Can understand your frustration and anxiety, but well done for persevering and getting a good result.
dave
User
Sandra
I feel for you and agree what was happening was completely unacceptable. I am glad with your tenacity you have got some resolution (maybe?) There is no doubt the postcode lottery for Health services continues and of course right now every politician who ever breathed (though some I actually doubt are of a human life form) is making the most of any opportunity to score points from it egged on by the media.
It saddens me that such an envied institution as our NHS can be great in some places and very poor in others, I spent most of my career in Corporate change management and really believe that with the right people directing a properly constituted and managed change programme our NHS could be redesigned, rebuilt and delivered to the public, once more becoming the envy of other Nations. Unfortunately I think the appetite for such a gigantic undertaking is non existent, public sector change has way too many stakeholders all thinking their particular quango knows best. I can but dream?!!
My little opportunity rant over so sorry for "spilling" on your conversation and I really do hope this important follow up appointment is not cancelled or stepped back yet again. There are some people who do not have the confidence or ability to fight their own corner, lord alone knows what happens for them.
Best wishes
xx
Mo
User
If you do nowt, nothing will happen. Unfortunately, you have to be proactive to achieve results. Well done on getting the appointment you need.
Paul
Stay Calm And Carry On. |
User
It's sooo frustrating...well done to you and your OH for not accepting it (many would)...hope the appointment goes ok
Bri
User
Hello, no it isn't good is it? Good on you for complaining. As I have said before my other half nearly had the brachytherapy cancelled, the consultant phoned at about 6pm the evening before to say it may be cancelled, my OH explained he had paid someone to come in feed all the cattle, but he said it was out of his hands, but to do the enema etc as arranged. The consultant phoned to say all going ahead, literally minutes before our leaving time. I would have been furious had it been cancelled, thank goodness it wasn't.
I myself have had very long waiting times, nothing anywhere near as serious as cancer, but one Dr said to return in 2 months, that was November, I have had 3 cancelled appointments and am still yet to see him! I don't mind but it shows how desperate the NHS is getting. There should be no excuse where cancer is concerned.
All the best and good luck.
Edited by member 13 Apr 2015 at 21:08
| Reason: Not specified
User
Hi Sandra,
Good on you for getting results and yes I totally agree it isn't good enough but sometimes we have to shout above the crowd to get heard. I have fingers crossed that you get the earlier appointment.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
I was polite but firm, although inside I was raging. It isn't after all, the fault of the people we deal with on the phone, it's the system.
I did say to John yesterday, I'm savvy when it comes to using the phone and pretty computer literate, but what about those poor souls who don't know how to follow through or have nobody to do it do it for them.
To be given a phone number for the Complaints Dept and that being out of date was the icing on the cake, so although I was polite but insistent, it was through gritted teeth.
I'm not sure what would have happened if the first young lady in Complaints had not been so understanding and agreeing with me in all respects.
Thanks for all your support, all of you. A day in the garden today finishing off my raised bed might lower the blood pressure. It was planned for yesterday but by the time I got off the phone I couldn't be bothered.
Enjoy the sunshine everyone
We can't control the winds - but we can adjust our sails |
User
Hi Sandra,
You asked if you were over reacting?
Hell no! I for one would have been apopleptic.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif
What you have experienced has been totally unacceptable.
I echo all of the comments in the replies, and can only add that you did exactly the right thing, and I was smiling as you said you were polite but firm, even though raging inside. The times I've had to do that!
IT WORKS.
I learned very early on that I couldn't trust that referrals and appointments would actually be made and scans or tests arranged.
Too many mistakes can happen after your notes leave the consultant and reach admin.
There is often a 'Bermuda Triangle' in many hospitals.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif
I would advise anyone to have the telephone numbers of your consutalnt's secretaries, and about a fortnight after your appointment, ring them to confrim that what you were promised has actually been arranged. And keep at them untill you're assured that all the necessary work has been done.
Good luck in the future.
George
Edited by member 14 Apr 2015 at 15:19
| Reason: Not specified
|
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User
Totally sympathise. This was also the rule rather than the exception during Neil's illness and put even more stress on us both during a dreadful time. I was listening to the radio last week and there was a man who had nursed his wife who had brain cancer saying, he, a complete lay person had been the one to co-ordinate care, and how wrong this is. I always thought the cancer nurses had a co-ordinating role but this wasnt the case until the palliative care staff got involved.
I appreciate the NHS is over stretched but sometimes I found the systems made it harder for people to do their jobs. You have to keep chasing these things up but it is far from ideal. Regards,
Fiona. x
User
Well, give them their due.
About twenty minutes after I spoke to the original lady, a service provider got back to me and said she had done some organising and she found us an appointment in June but would keep looking.
10 minutes later she rang to say she could offer us an appointment in May a week or so BEFORE the cancelled one.
I am just so cross. Now John has to go and get another blood test form from the GP, who will resent it because it comes out of their budget, and if they cancel again then the hospital won't know these result either, like the last one.
Still, at least we'll be able to see them and as long as it is still going down, no matter how slowly it's all we can hope for.
So frustrating.
Edited by member 13 Apr 2015 at 16:15
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Can understand your frustration and anxiety, but well done for persevering and getting a good result.
dave
User
Sandra
I feel for you and agree what was happening was completely unacceptable. I am glad with your tenacity you have got some resolution (maybe?) There is no doubt the postcode lottery for Health services continues and of course right now every politician who ever breathed (though some I actually doubt are of a human life form) is making the most of any opportunity to score points from it egged on by the media.
It saddens me that such an envied institution as our NHS can be great in some places and very poor in others, I spent most of my career in Corporate change management and really believe that with the right people directing a properly constituted and managed change programme our NHS could be redesigned, rebuilt and delivered to the public, once more becoming the envy of other Nations. Unfortunately I think the appetite for such a gigantic undertaking is non existent, public sector change has way too many stakeholders all thinking their particular quango knows best. I can but dream?!!
My little opportunity rant over so sorry for "spilling" on your conversation and I really do hope this important follow up appointment is not cancelled or stepped back yet again. There are some people who do not have the confidence or ability to fight their own corner, lord alone knows what happens for them.
Best wishes
xx
Mo
User
If you do nowt, nothing will happen. Unfortunately, you have to be proactive to achieve results. Well done on getting the appointment you need.
Paul
Stay Calm And Carry On. |
User
It's sooo frustrating...well done to you and your OH for not accepting it (many would)...hope the appointment goes ok
Bri
User
Hello, no it isn't good is it? Good on you for complaining. As I have said before my other half nearly had the brachytherapy cancelled, the consultant phoned at about 6pm the evening before to say it may be cancelled, my OH explained he had paid someone to come in feed all the cattle, but he said it was out of his hands, but to do the enema etc as arranged. The consultant phoned to say all going ahead, literally minutes before our leaving time. I would have been furious had it been cancelled, thank goodness it wasn't.
I myself have had very long waiting times, nothing anywhere near as serious as cancer, but one Dr said to return in 2 months, that was November, I have had 3 cancelled appointments and am still yet to see him! I don't mind but it shows how desperate the NHS is getting. There should be no excuse where cancer is concerned.
All the best and good luck.
Edited by member 13 Apr 2015 at 21:08
| Reason: Not specified
User
Hi Sandra,
Good on you for getting results and yes I totally agree it isn't good enough but sometimes we have to shout above the crowd to get heard. I have fingers crossed that you get the earlier appointment.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
I was polite but firm, although inside I was raging. It isn't after all, the fault of the people we deal with on the phone, it's the system.
I did say to John yesterday, I'm savvy when it comes to using the phone and pretty computer literate, but what about those poor souls who don't know how to follow through or have nobody to do it do it for them.
To be given a phone number for the Complaints Dept and that being out of date was the icing on the cake, so although I was polite but insistent, it was through gritted teeth.
I'm not sure what would have happened if the first young lady in Complaints had not been so understanding and agreeing with me in all respects.
Thanks for all your support, all of you. A day in the garden today finishing off my raised bed might lower the blood pressure. It was planned for yesterday but by the time I got off the phone I couldn't be bothered.
Enjoy the sunshine everyone
We can't control the winds - but we can adjust our sails |
User
The last time I had a psa blood test was in December 2014, I should have one every 3 months,
I contacted the hosptial who told me I had been dischaged, and was under my GPs care, no one had informed me of this
I contacted my GP in March and requested a blood test....after a number of calls , they told me they couldnt find the result and told me not to worry its not important but make an appointment to see the GP ( once again) and get a blood test form, (Friday)
unable to get a test on Friday and on Monday because they were so busy ! they only do 25 at a session, unless I trek miles to a hospital, decided not to.
Had a another blood test today (Tuesday) some four months since my last test, I hope I get a result this time....the NHS is in chaos IMO !
Edited by member 14 Apr 2015 at 12:05
| Reason: Not specified
User
Hi Sandra,
You asked if you were over reacting?
Hell no! I for one would have been apopleptic.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif
What you have experienced has been totally unacceptable.
I echo all of the comments in the replies, and can only add that you did exactly the right thing, and I was smiling as you said you were polite but firm, even though raging inside. The times I've had to do that!
IT WORKS.
I learned very early on that I couldn't trust that referrals and appointments would actually be made and scans or tests arranged.
Too many mistakes can happen after your notes leave the consultant and reach admin.
There is often a 'Bermuda Triangle' in many hospitals.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif
I would advise anyone to have the telephone numbers of your consutalnt's secretaries, and about a fortnight after your appointment, ring them to confrim that what you were promised has actually been arranged. And keep at them untill you're assured that all the necessary work has been done.
Good luck in the future.
George
Edited by member 14 Apr 2015 at 15:19
| Reason: Not specified
|