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anyone changed hospital for quicker treatment

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User
Posted 20 Oct 2018 at 19:26

Hy,have posted before about waiting times for robotic surgery,was initial told I would be waiting 4 to 6 weeks,now it's 8 to 10,I know many are telling me,a few weeks won't make any difference,but in my head It's already spreading,I can't sleep,or eat,I'm probably weak,but ,I can't lift the depression,Now,I've been told that if I go to Stockport (about an hour away)I can be seen much sooner,just worry that if I transfer and then go there,some delay could happen there also,thoughts please,should I stay where I know or try and get treated somewhere else?

User
Posted 20 Oct 2018 at 22:28
Get confirmation from your GP that the wait really would be shorter before you commit to changing hospital. The NHS targets for treating cancer don't apply if the patient has asked for a change of hospital.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Oct 2018 at 05:48
Hi Dave,

I live in Coventry and my local urological surgeon does around 70 robotic prostatectomies a year. At my request I got referred on the NHS to a much more experienced surgeon in Guildford who does 300-400 ops a year, with over 3000 total under his belt.

The local consultant even mentioned the Guildford guy’s name when I mentioned a certain prostatectomy procedure, and was totally OK with him doing my prostatectomy. The op was done in Guildford, the catheter removal in Coventry, the post-operative consultation in Guildford, and oncological and urological follow-ups are now back in Coventry, under the auspices of the original surgeon.

Apart from a few quid spent on petrol and train fares, everything went smoothly, especially as the Guildford surgeon charges £19,950 for a prostatectomy in his private clinic!

I have been told I am now ‘cured’, so happy days.

Best of luck,

Cheers, John.

User
Posted 21 Oct 2018 at 22:04

Hi Dave,  I can understand how you feel about it taking a long time. I was very speed oriented as I had the 5am wild imagination syndrome.  I wanted a surgeon with experience but at the end of the day wasn't over concerned about how the op was done.

You can find a surgeons experience on the website of the British Association of Urological Surgeons.  I was looking at all the hospitals in the area including private ones and checking their surgeons although in the end I got a good date and was happy with the nearest surgeon.

I think your hospital should be finding you somewhere else even if they have to pay a private hospital as 8-10 weeks is very poor and takes you to Christmas which could cause further problems.

User
Posted 25 Oct 2018 at 00:52
Wow! Just enough time to go shopping then - some useful items include bucket, pants (not boxer shorts) in a size larger than usual, some tracksuit pants or joggers in a dark colour and preferably with a drawstring waist, waterproof sheet or pads for after the catheter comes out (might not be needed but just in case) and check whether the hospital provides Instagell for the end of your penis.

And have you applied for your prescription exemption certificate?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Nov 2018 at 22:57
Hope your recovery continues to go well.

Ido4

User
Posted 10 Dec 2018 at 11:59
Søren has got me through a tragic and tortuous few years and I have triumphed rather than just surviving; he stays.

People that don't like him can just not read my posts and I had already made a mental note never to reply to any of Reen's posts in case I distress her further.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Dec 2018 at 12:10

Originally Posted by: Online Community Member

When you read without logging on the comments are anonymous.   However if you know the quote owner you can quickly see all the owners comments.  It might not be important but you never know what info is being put together.  I no longer sign my comments so they're less traceable.   

 

Actually, that is a good point. I have had that signature for many years and hadn't considered the implications of the new forum being open access. Until 2014, no-one could see any posts unless they were members and signed in - the PCUK decision to make it googleable was a major concern and led to a number if people leaving. It is the main reason that I always reply with people's tag rather than their real name.

Newer members are a bit naive about this sometimes I think. When Ulsterman first joined, he gave his real first name and then in a subsequent post mentioned what he did for a living... from that I was able to find his full name, the organisation that he works in and his photo. It was funny at the time but also quite sobering - I wouldn't want one of our children or someone that knows me professionally to stumble on some of the stuff I have written about our sex life, for example. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Dec 2018 at 18:14

Strange that Reenmatch as chosen to have a go about this again  yet has not responded to thank the kind folk who have responded about her husband's situation.

Show Most Thanked Posts
User
Posted 20 Oct 2018 at 20:45
You have not put anything under your Profile/Bio other than you have been diagnosed with advanced prostate cancer. If this is your situation it may well be that in addition to your proposed Prostatectomy, you may need follow up RT.

In your position I would try to ascertain what the waiting time would be for surgery at alternative hospitals within your CCG area and whether you could have follow up RT if needed with the hospital you currently attend. and further monitoring by them as required. You would need to discuss with your GP to initiate any change.

It does make for a more tidy arrangement if all treatment is carried out by the same hospital but I had my RT in Germany, was subsequently monitored by The Royal Marsden, who in turn referred me to UCLH for further treatment, so it can be done .

Barry
User
Posted 20 Oct 2018 at 21:19

Thankyou,have updated my profile,my head is all over the place to be honest

User
Posted 20 Oct 2018 at 22:28
Get confirmation from your GP that the wait really would be shorter before you commit to changing hospital. The NHS targets for treating cancer don't apply if the patient has asked for a change of hospital.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Oct 2018 at 05:48
Hi Dave,

I live in Coventry and my local urological surgeon does around 70 robotic prostatectomies a year. At my request I got referred on the NHS to a much more experienced surgeon in Guildford who does 300-400 ops a year, with over 3000 total under his belt.

The local consultant even mentioned the Guildford guy’s name when I mentioned a certain prostatectomy procedure, and was totally OK with him doing my prostatectomy. The op was done in Guildford, the catheter removal in Coventry, the post-operative consultation in Guildford, and oncological and urological follow-ups are now back in Coventry, under the auspices of the original surgeon.

Apart from a few quid spent on petrol and train fares, everything went smoothly, especially as the Guildford surgeon charges £19,950 for a prostatectomy in his private clinic!

I have been told I am now ‘cured’, so happy days.

Best of luck,

Cheers, John.

User
Posted 21 Oct 2018 at 06:31

Thanks LynEyre

That's one of my concerns,that's given me some clarity

User
Posted 21 Oct 2018 at 06:40

Thanks John,that's really interesting and helpful,in knowing what questions to ask,I know this robotic surgery is a lot better regardng recovery time,but appears to make waiting times longer to only two a day being able to be done,well,at my hospital anyway(Sheffiield)

Regards Dave

User
Posted 21 Oct 2018 at 07:04
So my best tip for you Dave, rather than worrying too much about the timescale or location (you should only be in hospital one or two nights if everything goes well) is to find out the experience and outcomes of whichever surgeon and where YOU choose to carry out your operation.

That has so much relevance to the success of the procedure, in terms of cancer excision, but also in post-operative continence and, (if you’re lucky) erectile function. “Professor 3000 prostatectomies” told me he would not send a friend or family member to any surgeon who does less than 100 prostatectomies a year.

I say let newly qualified consultant urological surgeons practice their RALPs on someone else!

Cheers, John

User
Posted 21 Oct 2018 at 07:13

Really appreciate your advice John

Cheers Dave 

User
Posted 21 Oct 2018 at 10:58

Originally Posted by: Online Community Member

Thanks John,that's really interesting and helpful,in knowing what questions to ask,I know this robotic surgery is a lot better regardng recovery time,but appears to make waiting times longer to only two a day being able to be done,well,at my hospital anyway(Sheffiield)

Regards Dave

Quicker recovery, shorter hospital stay but slightly worse outcomes in terms of incontinence, impotence and cancer recurrence - don't be misled that it is even a bit 'better' than open surgery because that isn't true. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Oct 2018 at 11:21
User
Posted 21 Oct 2018 at 13:29
It looks like this is a small scale study of outcomes for men who were locally advanced - not really surprising that the outcomes are similar when many of the men needed non-nerve sparing surgery. The European study published earlier in the year was for all RPs. If we take a very small scale data set of members here, the men that have had the worst side effects and complications have all had robotic or keyhole RP, I think.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Oct 2018 at 15:01
Unfortunately cost savings outweigh life expectancy for NICE
User
Posted 21 Oct 2018 at 16:01
Sorry, Pete, that just isn't true. The whole point of the NICE evaluations is that a value is placed on survival years.

AC

User
Posted 21 Oct 2018 at 16:36
Yes but to a limit.

E.g. There are drugs that are used for late stage cancer patients that they won’t release for early ones even though they have a positive effect because they can’t negotiate hard enough with big pharma to get the prices down.

Don’t misunderstand me - I understand the impossible situation NICE is in because they have to ration. The real issue is that the whole model is messed up. A model where the company that does the research AND manufactures the drugs to a patent is a cartel / oligopoly model. The government needs to negotiate harder with the pharmas to control prices, legislate to separate research and manufacture (like we had to with separating investment and day to day banking) and invest more as a nation in research rather than let capitalism run it. If you read some of the horror stories about what happens across the globe in his arena it would make your blood boil.

User
Posted 21 Oct 2018 at 22:04

Hi Dave,  I can understand how you feel about it taking a long time. I was very speed oriented as I had the 5am wild imagination syndrome.  I wanted a surgeon with experience but at the end of the day wasn't over concerned about how the op was done.

You can find a surgeons experience on the website of the British Association of Urological Surgeons.  I was looking at all the hospitals in the area including private ones and checking their surgeons although in the end I got a good date and was happy with the nearest surgeon.

I think your hospital should be finding you somewhere else even if they have to pay a private hospital as 8-10 weeks is very poor and takes you to Christmas which could cause further problems.

User
Posted 22 Oct 2018 at 01:50
PPete,

The cost of drugs is high because it is said on average to take up to 12 years to research, obtain approval for and market a successful new drug involving research into many possibilities that are not successful and have to be aborted. All these costs have to be incorporated in the charge for the successful drug which in the event may be outperformed and superseded quite quickly by that of one from a competitor. Then there is a time limit before others can make generic copies. It's a high risk business. The returns on pharmaceuticals are not high (the reason I sold a small holding I had for years). UK Governments do not have enough of our money to pay for all this speculative research, they even needed to have Private/Public Partnerships to pay for some of the new hospitals. There are also many other areas other than medical where money is urgently needed. In any case, most of the major pharma companies are outside the UK and if we don't meet their price we don't get the drugs.

I have not expanded further as it doesn't help Dave, although decisions made by NICE curtailing treatment could affect any of us. Fortunately, it was the Pelican Foundation Trust rather than the NHS who funded the 'Forecast' study wherein I had HIFU in 2015, thereby saving NHS money. So the NHS is being helped out by private charities.

Barry
User
Posted 22 Oct 2018 at 09:14
I think I heard the cost to trial a new drug from inception to market costs around £100,000,000!
User
Posted 22 Oct 2018 at 14:13
US$2.6 Billion+ according to the Tufts report of 2014 and on a steep upwardly rising curve so much more now!
Barry
User
Posted 24 Oct 2018 at 20:16

Just a little update,yesterday,I decided that i would change hospitals,my nerves have got worse,silly I know,what decided me that I was still going to have the same consultant,and go back to my present hospital for follow up care,To cut it short I was transferred yesterday,they called me today,and I'm booked in for operation on the 10th of November

regards dave

 
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