When John was first diagnosed and we were under the local hospital we were given a phone number for the clinical care nurses and although they were hard to get hold of if you had a query, they did eventually get your answerphone message and would ring back.
Once John chose Brachytherapy, which wasn't offered at our local hospital we were transferred to The Royal London / Barts.
Now, they have been excellent in sending us copies of any reports they send to our GP, they are efficient and we are very pleased with the results, so far of the treatment. They even text me a couple of days before appointments to remind us we have one, so if it's missed it's down to us.
We did have a massive hiccup once which caused me to make a major complaint and they fell over backwards to sort it out
There is a BUT here. If we have a query then we have no contact.
We were told that we could approach our original clinical care team under a system called "Shared Care", which should involve Royal London, the nurse and our GP.
It doesn't happen though. Our GP has so far has willingly done the PSA for us and we take the results with us, they even print it out at the surgery.
If we need to query anything there is no longer any point in telephoning the nurses as they have never, in over a year , returned any of our calls, and although John's GP is kind and supportive he fully acknowledges that he doesn't know anything about Brachy.
So I have to do all the chasing regarding appointments , results etc. It's OK for me, I'm used to the telephone and chasing people but I do feel for those who hate having to do this just to get information.
In order to help me I have an A4 binder and all John's hospital letters etc are filed in chronological order. Dates for appointments are immediately put on the calendar and highlighted, following the fiasco I mentioned above and if the hospital changes an appointment date I make sure we get a new one and one with the least delay
I have a list at the front of all appropriate telephone numbers, including the consultant's secretary's name and number.
It's a shame that it's necessary but that's life. If you feel that life is complex now and will get even more so in the future, then perhaps try and start a folder so you can keep track of everything and highlight all important appointment dates in a different colour on your calendar (to differentiate from family birthdays, dentists etc)
Sorry if I'm stating the obvious. You may already be doing all this and still struggling, in way case please accept my apologies
Edited by member 13 Dec 2015 at 09:57
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Hi Marge,
Really sympathise with you. There is good care out there but that's no consolation when things arent going as they should. With all the pressure on the NHS one wonders if things will get better or not. As you say, it's just about ok if you are up to taking all this on, but what if that isnt the case. One of the things that came from the compalint about Neil's care was how poor communication often was between departments let alone to patients and families. In our case, oncology and urology werent good communicators despite instigating onco-urology nurses to fulfil this role. It needed someone to take an overall co-ordinating resposibility like we had in mental health, trouble with that it made you an administrator rather than a clinician ! The best co-ordinator we found was the Hospice nurse, who assessed things at home and fed this back very assertively to the other teams who just dont see what happens domestically in terms of coping with the complications of the disease and looking after someone ! They just saw the medical side rather than the holistic aspect whereas the palliative care people treat the patient and are there for the family. One of the outcomes of Neil's review was that everyone diagnosed with life limiting illness should have earlier consideration for a palliative care referral. Also, you cant always be sure different departments are aware of the severity of the illness. I asked one urologist at a meeting did his department know the extent of my partner's illness in considering whether he was likely to deteriorate quickly or not ? 'Yes' he replied, but this was not substantiated by a report I received later which said that wasnt the case !
Reading authors like Dr Phil Hammond and taking account of my own experiences suggests the NHS is not as good as it should be in co-ordinating complex cases which span a couple of departments. If you are struggling it's important to make it very clear otherwise the clerical role will default to you, know just how it feels, you sort of become a care worker but this eats into the husband /wife relationship, one of the things I most regretted in retrospect. You are certainly not alone !
Fiona. xx
Edited by member 13 Dec 2015 at 12:15
| Reason: Not specified
User
Marje - I've read about "Your Medical Team" as well. However, I'm quite happy being the person that has to do all the co-ordination. Why? Answer - there's no one I trust more than myself to get it right. I'm the one with the iron in the fire.
There's one thing you need to know about me. I worked all my life in the Information Technology industry. For a substantial part of that time I was a Project Manger. I am a creature of my background. I try to be highly organised (Mrs_ColU would say anally retentive http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif ). Mr Spock is my hero!
I'm the Project Manager for the project called 'Me'. I have a number of team members - my lovely Onco, the MDT, my GP, my GP's practice nurses, the nuclear medicine, CT and MRI scanning departments at The Royal Devon and Exeter hospital and Healthcare from Home who deliver my Enzo. They don't know they are team members who report to me as their Project Manager but I do and as their Project Manager I'm going to ensure they work efficiently and effectively. The nice thing about being their Project Manager is I can fire them if they aren't performing well. I've already fired one GP, he doesn't know he's been fired but he'll never make it back onto my team. One of my major tasks as their Project Manager is to make sure they all have perfect knowledge about the current state of the project. Therefore, I'm always very careful when I meet with any one of them not to assume they are au fait with the current state of the project and so I always bring them up to date on where we are today. This project is different from all the other projects I've ever managed. With all of them I've wanted to get them finished, delivered to time and budget and then to move on to the next project. This project is one that I don't want to finish.
To be slightly more serious, there are a few things I've learned about in the last year or so that may be of help to you and others and I'll make a couple of posts soon about them.
Edited by member 14 Dec 2015 at 15:23
| Reason: Not specified
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Hi piglet, I think that I am in the same boat as you with this as I have had to chase all the various departments to get appointments rolling and confirmed, I was told just after diagnosis that there was a "team" meeting where they all discuss my case and decide what treatment I was to be offered and apart from that I am sure the string is not tied together and no one talks to each other.
I just thought that it was the way of the NHS where they say one thing(about treatment) and do another. We are just passengers on this ride not to be consulted with all the facts but to be kept at arms length, give minimal info and hope we do not ask tricky questions.
What I can say is that most of the departments seem to be very cocientious when I get there and do not really have any complaints about that.
I hope things improve for you both and until it gets better you will have to carry on being an unpaid co-ordinater, at least you know all the stages that you are at and where you are at present rather than sitting at home wondering if things are working in the correct order. Stay in control and be an active part of the loop even if others are not.
Best wishes, Chris/Woody
Life seems different upside down, take another viewpoint
User
When John was first diagnosed and we were under the local hospital we were given a phone number for the clinical care nurses and although they were hard to get hold of if you had a query, they did eventually get your answerphone message and would ring back.
Once John chose Brachytherapy, which wasn't offered at our local hospital we were transferred to The Royal London / Barts.
Now, they have been excellent in sending us copies of any reports they send to our GP, they are efficient and we are very pleased with the results, so far of the treatment. They even text me a couple of days before appointments to remind us we have one, so if it's missed it's down to us.
We did have a massive hiccup once which caused me to make a major complaint and they fell over backwards to sort it out
There is a BUT here. If we have a query then we have no contact.
We were told that we could approach our original clinical care team under a system called "Shared Care", which should involve Royal London, the nurse and our GP.
It doesn't happen though. Our GP has so far has willingly done the PSA for us and we take the results with us, they even print it out at the surgery.
If we need to query anything there is no longer any point in telephoning the nurses as they have never, in over a year , returned any of our calls, and although John's GP is kind and supportive he fully acknowledges that he doesn't know anything about Brachy.
So I have to do all the chasing regarding appointments , results etc. It's OK for me, I'm used to the telephone and chasing people but I do feel for those who hate having to do this just to get information.
In order to help me I have an A4 binder and all John's hospital letters etc are filed in chronological order. Dates for appointments are immediately put on the calendar and highlighted, following the fiasco I mentioned above and if the hospital changes an appointment date I make sure we get a new one and one with the least delay
I have a list at the front of all appropriate telephone numbers, including the consultant's secretary's name and number.
It's a shame that it's necessary but that's life. If you feel that life is complex now and will get even more so in the future, then perhaps try and start a folder so you can keep track of everything and highlight all important appointment dates in a different colour on your calendar (to differentiate from family birthdays, dentists etc)
Sorry if I'm stating the obvious. You may already be doing all this and still struggling, in way case please accept my apologies
Edited by member 13 Dec 2015 at 09:57
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Thank you, Chris and Sandra. We're not alone, then!
You're right, Sandra, it is quite a clerical task keeping the diary and scheduling everything in the right order. At one point we got the sequence wrong, though, and ran out of Enza because no one had told us that the oncologist appointment had to precede the dispensing of the tablets, in order to have a prescription made out. We have now talked this through with the oncologist and the chemo nurse, and that bit should be OK from now on. We do use files, diary etc efficiently, but we can't process information that we don't get in the first place.
Don't get me wrong; we are very impressed with the actual care Tony is having. It just seems a false economy to make expensive treatments, tests and scans freely available and then have no proper system for dealing with the results of the tests or making them available to the patient. We're supposed to get copies of the follow-up letter the onco sends to the GP, but every time we have to ring and remind the secretary to send us a copy. This isn't even efficient, it just makes extra work.
Perhaps the info on this web site is too optimistic in its description of the care system. It would be more honest to say this is ideally what should happen, but it may not, and you may have to work out what is going on and take the responsibility yourself; or if the set-up they describe is what's supposed to be in place, they might advise us on how to make it happen.
It's all very well for a sensible, literate and organised couple to deal with these things, but not all men have a partner, or the computer/literacy skills to keep on top of things. We can manage for now (just!), but later on, the treatment will become more complicated and involve other agencies. By that stage, we may both be feeling less emotionally robust and energetic, and it would be reassuring to have a nurse who helped us co-ordinate the treatment, tests, results and appointments.
Marje
User
Hi Marge,
Really sympathise with you. There is good care out there but that's no consolation when things arent going as they should. With all the pressure on the NHS one wonders if things will get better or not. As you say, it's just about ok if you are up to taking all this on, but what if that isnt the case. One of the things that came from the compalint about Neil's care was how poor communication often was between departments let alone to patients and families. In our case, oncology and urology werent good communicators despite instigating onco-urology nurses to fulfil this role. It needed someone to take an overall co-ordinating resposibility like we had in mental health, trouble with that it made you an administrator rather than a clinician ! The best co-ordinator we found was the Hospice nurse, who assessed things at home and fed this back very assertively to the other teams who just dont see what happens domestically in terms of coping with the complications of the disease and looking after someone ! They just saw the medical side rather than the holistic aspect whereas the palliative care people treat the patient and are there for the family. One of the outcomes of Neil's review was that everyone diagnosed with life limiting illness should have earlier consideration for a palliative care referral. Also, you cant always be sure different departments are aware of the severity of the illness. I asked one urologist at a meeting did his department know the extent of my partner's illness in considering whether he was likely to deteriorate quickly or not ? 'Yes' he replied, but this was not substantiated by a report I received later which said that wasnt the case !
Reading authors like Dr Phil Hammond and taking account of my own experiences suggests the NHS is not as good as it should be in co-ordinating complex cases which span a couple of departments. If you are struggling it's important to make it very clear otherwise the clerical role will default to you, know just how it feels, you sort of become a care worker but this eats into the husband /wife relationship, one of the things I most regretted in retrospect. You are certainly not alone !
Fiona. xx
Edited by member 13 Dec 2015 at 12:15
| Reason: Not specified
User
Marje - I've read about "Your Medical Team" as well. However, I'm quite happy being the person that has to do all the co-ordination. Why? Answer - there's no one I trust more than myself to get it right. I'm the one with the iron in the fire.
There's one thing you need to know about me. I worked all my life in the Information Technology industry. For a substantial part of that time I was a Project Manger. I am a creature of my background. I try to be highly organised (Mrs_ColU would say anally retentive http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif ). Mr Spock is my hero!
I'm the Project Manager for the project called 'Me'. I have a number of team members - my lovely Onco, the MDT, my GP, my GP's practice nurses, the nuclear medicine, CT and MRI scanning departments at The Royal Devon and Exeter hospital and Healthcare from Home who deliver my Enzo. They don't know they are team members who report to me as their Project Manager but I do and as their Project Manager I'm going to ensure they work efficiently and effectively. The nice thing about being their Project Manager is I can fire them if they aren't performing well. I've already fired one GP, he doesn't know he's been fired but he'll never make it back onto my team. One of my major tasks as their Project Manager is to make sure they all have perfect knowledge about the current state of the project. Therefore, I'm always very careful when I meet with any one of them not to assume they are au fait with the current state of the project and so I always bring them up to date on where we are today. This project is different from all the other projects I've ever managed. With all of them I've wanted to get them finished, delivered to time and budget and then to move on to the next project. This project is one that I don't want to finish.
To be slightly more serious, there are a few things I've learned about in the last year or so that may be of help to you and others and I'll make a couple of posts soon about them.
Edited by member 14 Dec 2015 at 15:23
| Reason: Not specified
User
I see what you mean, David, and believe me, we do the admin and management thing ( jointly). We have a computer diary document where we write down everything that's taken place since Tony was diagnosed - consultations, phone call, test results, treatment sessions and drugs administered, advice given. In 15 months, this now runs to 21 pages in a Word document. I believe this is by far the most thorough record there is of Tony's treatment. The hospital records will have more detail on certain things, but they don't have the whole picture. There is also a fat file of letters, test result tables, leaflets, etc.
The thing is, we don't have the whole picture either. We have very little idea, when we see a given practitioner, what they already know, and we can't ask them to read through all our 21 pages as well as their own records,(although we sometimes have to remind them about a scan or Xray result, and send them scurrying off to look at it). We don't have access to the scan and Xray results or know how to interpret them or who has seen them. Consultations can be very stressful, and it's easy to get home and think, "What did he mean by that?" but then it's too late, and it's very difficult to get any meaningful response from anyone until we next see them face to face. We have also turned up to appointments to find that the person facing us has no more idea than we have why we're there or what is supposed to be achieved.
And of course there may come a time when it's no longer possible to administer the "project" efficiently, as the disease progresses. I am heartened by Fiona's experience of the palliative care team, and hope that when that stage is reached, they will be able to support us in a more holistic way than anyone does at present.
Marje
User
I do understand Marje. I think what you're doing is giving you and Tony the best possible chance of getting excellent care.
The reason I'm certain we all need to try to co-ordinate our care as best we can is based on what I've seen and heard over my last 2+ years of dealing with the Health service. Just one example. Last time I saw my lovely Onco, who I have the greatest admiration for and trust completely, I asked her how many patients she had. She didn't know the answer! She did know she had loads of new patients being referred to her every month. She's overloaded but still she gives me 20 minutes of her time (and more if needed) every 8 weeks. I'll do everything I can to make her life as easy as possible. That way we'll both win.