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What happened to the right for a NHS patient to choose a hospital?

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User

Posted 20 Nov 2019 at 19:15

It is very likely my partner has very aggressive prostate cancer, His GP has referred him to our local hospital, The hospital has just come out of special measures because it has issues with diagnostic imaging and the radiography service was "not providing a safe service for patients". The special measure report states that the hospital still needs improvements. And if that's not worrying enough there is an article in a medical journal that states that the hospital is pressurising prostate cancer patients into receiving treatment within 62 days even when it is unneccessary.

I thought that the NHS had given every patient a right to choose a hospital that would provide the best treatment. But it appears that the 14 day urgent referral for cancer removes that choice. He can only be treated at a local hospital. I understand that with aggressive prostate cancer it is vital to get the first treatment right. If it fails it will reduce my partners chance of a cure. I think that if my partner gets his cancer treatment at this hospital it will be his death sentence .

Am I right? If so is there anything I can do to help him? I would be willing to take him to a hospital miles away as long as I thought he would be getting the best treatment,

User

Posted 20 Nov 2019 at 23:52

Your concerns are understandable. Perhaps you can advise why you think he's an aggressive case.

If it's a first appointment there is no reason another hospital shouldn't have the 14day/62day target. Not many achieve it and often with Prostate Cancer it's not over critical. Although I admit I thought it was at the time and still do for my condition as diagnosed by biopsy and MRI.

Is his psa very high or has he had a biopsy/MRI?

I'm sure someone else will add to this discussion.

All the best , Peter

Edited by member 20 Nov 2019 at 23:53 | Reason: Not specified

User

Posted 21 Nov 2019 at 00:12

I live in Coventry, yet had my prostatectomy on the NHS at a hospital in Guildford as that is where a leading urologist works. I have also seen an oncologist on the NHS at the Royal Marsden Hospital in Surrey. Entirely my choice.

Best of luck.

Cheers, John.

User

Posted 21 Nov 2019 at 19:28

Thank you for your replies. I've always believed that women are as strong as men but I'm afraid that I've done nothing but cry for the past few days.

My partner had a PSA level of 7.6 in June but had an infection in his semen. So he decided to get rid of the infection and retake the PSA Test. It took two courses of antibiotics and he didn't get the all clear for nearly 2 months - long story involving contaminated/lost samples. He waited for 4 weeks before asking for another PSA test but had to then for wait for 5 weeks (flu jab season). To be honest he wasn't that worried. He'd been through a prostate cancer scare in 2013 and it turned out to be an enlarged prostate.

He got the result on 12.11.19. He was devastated. It was 9.6. We have read that such an increase is usually a sign of aggressive cancer. And he has always had a low testosterone count. If men with low T get prostate cancer it is almost always aggressive.

His GP gave him an urgent referral to our local hospital. But he has no faith in them. When he had his scare in 2013 the consultant persuaded him to have TRT. Within 2 months his PSA rose from 3.5 to 4.3 and there was no difference in his libido. He was very worried and decided to stop TRT. His consultant told him he hadn't given it a chance to work and that he should up the dose!!!!!!!

So we decided to ignore the referral and booked an appointment with a prostate cancer specialist. ,After a DRE he recommended an urgent MRI. My partner had the MRI today and the specialist will ring him tomorrow with the results.

Everything looks very bleak. High PSA , abnormal DRE and MRI scan required for two areas. We are so depressed and expecting the worst.

He will need a biopsy. But does he need to have it at the local hospital?

I doubt that they have the necessary skills/equipment to carry out a targeted biopsy.

Or can he choose a hospital that regularly carries out targeted biopsies?

Can anyone help?

User

Posted 21 Nov 2019 at 22:07

Sometimes a local surgery is tied in with a certain hospital or the area commissioning body want you to go to a hospital within their area. We did have a member who was being steered this way but went over the head of the local commissioning group to NHS England and got his preferred treatment done at another hospital outside his area, so sometimes you can be lucky.

Barry

User

Posted 22 Nov 2019 at 11:49

You are getting yourself in a spin - his PSA isn't that high at all for a man with enlarged prostate, there is no indicator at the moment that he has prostate cancer, let alone that it might be advanced. You are also reading snapshots of information and possibly misinterpreting.

Of course you can ask to be referred to a different hospital. Patient choice does stop the target clock ticking though so there is no guarantee that your partner would be seen as quickly as staying with the local hospital. The 14 days is only a guideline and hospitals don't fail something for not meeting it. Personally, I would wait to see whether the local hospital offers a template biopsy before deciding to go elsewhere - and if the MRI does show areas of concern, a TRUS biopsy would be sufficient anyway.

You can use the interactive map on the PCUK website to find out whether your hospital offers diagnostics to PROMIS standard, and also to check out the other hospitals within striking distance.

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

User

Posted 22 Nov 2019 at 22:02

I went direct to NHS England and got my brachytherapy at my preferred hospital. It took a couple of phone calls and confirmation from the out of area hospital that they would do it. After the procedure I went back under the care of my local urologist.

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23 <0.01

User

Posted 23 Nov 2019 at 10:44

My consultant rang me last night. He told me that he was almost 100% sure it was cancer. That's why he sent me for an MRI of two sites. But he told me that he couldn't find any cancer on the scan results. He is one of the UK's top men so he must know what he's doing.

He told me to go for another PSA test in January.

I'm just worried what to do if my PSA is still rising.

I've read posts on this forum of men with high PSA constantly being told they're OK until suddenly their not.

So at the moment we're relieved but living with a threat over our heads.

Like most people on this forum.

Many thanks for all your help

User

Posted 23 Nov 2019 at 12:28

'High' is subjective - there are men that have joined this forum with PSA of 50, 60, 70 or higher who subsequently got the all clear ... they simply had a very large prostate. If the PSA is in the thousands, they often decide not to bother with a biopsy as it is clearly cancer, and a member on here (Trevor), who was diagnosed with a PSA of 13,000, lived well for 5 years. The highest PSA our urologist has ever seen at DX was 160,000.

So while 9.6 is higher than normal, it is not 'high' in the context of 'definitely cancer' and if the urologist says there was no sign of cancer on the mpMRI then waiting 3 months before agreeing to go ahead with a biopsy seems sensible. Has he been given meds to reduce the size of his prostate?

PS just noticed that you have gone from posting as the wife / partner to posting as the man ... are you both using the same account? If so, when I say 'he' I mean 'you'.

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

User

Posted 23 Nov 2019 at 17:06

Sorry about that.

Yes we are using the same account.

We've been together for over 40 years and do everything together.

My partner hasn't been referred for a biopsy - the consultant said it isn't needed.

I know that I should be ecstatic but there's a little voice whispering to me 'there's no smoke without fire'.

Yes, 9.6 isn't that high but it rose from 7.6 in just 5 months. And in 2016 it was 4.

And he has low testosterone. If men with low testosterone get PC it is almost always the aggressive type.

The consultant didn't give any reason for the rise in PSA or suggest any treatment.

So what happens if it rises yet again?

Will my my partner be given an urgent referral and the whole process starts over again.

With the advances in prostatectomy surgery I'm beginning to think that men over 50 should just have their prostates removed and be done with it.

User

Posted 23 Nov 2019 at 19:06

"With the advances in prostatectomy surgery I'm beginning to think that men over 50 should just have their prostates removed and be done with it."

So you think men should routinely suffer some or all of the side effects even if they don't have cancer:

Loss of ejeculation
ED
Incontinence
Urge and frequency
Urine retention
UTIs
Hernia
Bowel problems
Risks from anaesthetic
Depression
Etc.

Prostate removal might save some lives but it will also considerably spoil most and ruin some.
Do you also think that people should have parts removed that are at risk of cancer as they get older? Breasts, Ovaries etc.

I hope your husband's diagnosis and outcome is good and wish you luck

Cheers
Bill

Edited by member 23 Nov 2019 at 20:10 | Reason: Not specified

User

Posted 23 Nov 2019 at 23:17

"With the advances in prostatectomy surgery I'm beginning to think that men over 50 should just have their prostates removed and be done with it."

One of the most highly regarded urologists in the UK and indeed internationally, says the Prostate is the last organ that is routinely removed completely if some cancer is found in it. He argues that as with other organs only the part affected by cancer should be treated and that there was a gradual move towards this, to help maintainfunction and avoid side effects as stated by Bill. So this is completely contrary to the ill informed way forward suggested in the quote.

Barry

User

Posted 24 Nov 2019 at 01:37

Originally Posted by: Online Community Member

1. My partner hasn't been referred for a biopsy - the consultant said it isn't needed.

2. Yes, 9.6 isn't that high but it rose from 7.6 in just 5 months. And in 2016 it was 4.

3. And he has low testosterone. If men with low testosterone get PC it is almost always the aggressive type.

4. So what happens if it rises yet again?

1. Yes, I realise that but if the PSA is still rising next year, your partner will be able to request a biopsy

2. Fairly classic rises for BPH or prostatitis; if the doubling time was less than 12 months there would be more concern

3. Not sure where you have read that but it isn't true; men on HT don't get more aggressive cancer as time goes on

4. Presumably you will stay on the urologist's books now and will be seen periodically. If not, if the PSA rises your GP will make a new referral

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

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