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Out of area treatment NHS rights

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User

Posted 25 Jul 2018 at 21:09

I have opted for Brachytherapy but it is not done locally.

My urologist has written to see if another hospital will take this on.

I have a copy of letter that was sent and it mentions the possibility that my CCG may not pay.

Since I want to be ready to fight my corner so to speak, what are my rights? Can I insist on treatment at a hospital of my choice?

I should mention that in my are it is open surgery or external beam radiotherapy, no other choices, hence my interest in going "out of area".

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

User

Posted 25 Jul 2018 at 21:09

I have opted for Brachytherapy but it is not done locally.

My urologist has written to see if another hospital will take this on.

I have a copy of letter that was sent and it mentions the possibility that my CCG may not pay.

Since I want to be ready to fight my corner so to speak, what are my rights? Can I insist on treatment at a hospital of my choice?

I should mention that in my are it is open surgery or external beam radiotherapy, no other choices, hence my interest in going "out of area".

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

User

Posted 01 Aug 2018 at 15:52

Well, I just had a nice lady from NHS England phone me, she confirms that there is "no problem" with funding the out of area treatment :-)

Now I just need the consultants to come back from holidays and get the ball rolling.

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

User

Posted 27 Oct 2018 at 13:06

Well, I am now back home after my Brachytherapy on the 25th, all went as to be expected and I had 74 “seeds” through 25 needle holes. I was left with the catheter in place for about 3 hours as there was a bit of bleeding into my bladder but I narrowly avoided a transfusion, so had to pass some large clots, by large I mean they were the size of a Titanic ‘berg.

The boredom of hanging around was alleviated to some extent by walking around the other beds in other rooms ( I had the single bedded “Royal” room with TV and radio ) and enquiring as to how many seeds they had had. I won! The nearest to me was 68, a walk in the park to my 74. I believe I will save a fortune on torch batteries as the seeds warm up. The trip to the theatre was a bit disappointing, I was looking forward to a ride on a trolley with blue lights and two tone horn, but no, I had to walk, down the lift along the passageway up some stairs and round the corner, all in my dressing gown from Asda ( £14, A BARGAIN) and my stripey red supportive underpants. I also bought a pair of real leather slippers to complete the outfit (£12 from Asda). Then I had to take them all off and put them in a plastic bag, another £26 wasted, my old slippers and dressing gown would have done, I admit my old grey (they used to be white) M&S underpants were past it, so the new stripey underpants won’t be wasted. The shaving between my legs was expertly done but they forgot the aftershave lotion, but since I was under by that time I never knew who did it, they could have done my chest and back as well.

In keeping with my first class room I had fish and chips with mushy peas for tea, “Royal” food indeed, the food was very good considering it travelled 1 mile on a stainless trolley.

I had toast and peanut butter for breakfast but I couldn’t eat my shredded wheat as the kitchen had run out of milk! Anyway I was satiated by the two slices of wholemeal bread.

I have never exposed my willy to so many young ladies as on this occasion ( the Police reports are incorrect) , they had to check the catheter and urine colour of course, but I didn’t understand the laughter as they left?

So, if you are going to have brachy, I hope this comprehensive and descriptive account will be of interest, feel free to ask if you need any further information.

John

Edited by member 27 Oct 2018 at 13:08 | Reason: Not specified

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

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User

Posted 25 Jul 2018 at 23:13

No you can’t insist. You sort of missed the boat - your legal right was to choose a different hospital for your first appointment but now you are under one, the CCG is not obliged to pay for treatment that they don’t offer. In practice, I think many CCGs would pay for brachy so hopefully it will not be an issue and your treatment will soon be underway. If you are refused, you can complain to the CCG. As far as I can remember, each CCG has to publish info about complaints received so it might be worth you checking their website to see whether there have been any complaints about brachy not being available.

There is an explanation of your legal rights on the NHS Choices website.

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

User

Posted 25 Jul 2018 at 23:38

I can understand your wanting clarification on this rather than getting treatment delayed due to potential wrangling between CCG's. The situation normally arises when a patient wishes specialized individual treatment or non standard treatment where a special funding application has to be made. However, Brachytherapy is a well recognized treatment for PCa and hopefully your CCG would fund it . If nobody can give you an authoritative answer, you could ask your CCG what their policy on this is. If the answer is unfavorable, you could ask NHS England, who have a sort of overarching role over CCG's, if a negative decision could be overruled. We did have a similar situation with a forum member several years ago who wanted Robotic Prostatectomy but his CCG were unable to offer it but declined to fund it in another area. (This was when very few hospitals had the Da Vinci Robot). Unfortunately, I can't remember the outcome.

Edited by member 25 Jul 2018 at 23:39 | Reason: Not specified

Barry

User

Posted 26 Jul 2018 at 08:23

Thanks you both, I suspected that I "had missed the boat" when I read through the NHS web pages. It's a strange way of doing things, it assumes that patients will know what is wrong before having any investigations and which treatment they would want and where before diagnosis.

Oh well, at least I know. The trouble is, I don't want any delays now, my PSA is rising (10.5) and my urologist is advising treatment "shortly".

I might be pushed into treatment that is not my first choice. Its all jumping the gun anyway, I will have to wait and see what the CCG say. I am off now to see if I can find contact info, a short enquiry might provide an answer.

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

User

Posted 26 Jul 2018 at 08:33

It happens but for a range of reasons. Brachy was John's first choice but in our city at the time, it was not offered to 'young men' due to concerns about long term risk of additional cancer. They have a different policy now.

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

User

Posted 26 Jul 2018 at 08:33

Whereabouts do you live?

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

User

Posted 26 Jul 2018 at 15:05

I am in Worcestershire, and I have a reply from the CCG ( amazing how quick an email can be) they are telling me it has to be funded by NHS England not by them ! So now the request has gone to NHS England and I await a reply.

I think I had better start researching the appeals procedure and maybe a letter to my MP.

It seems we no longer have a "National" Health Service at all.

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

User

Posted 26 Jul 2018 at 15:29

No we haven't had that for a long time. Take a look at what is happening in the South West where urology services prostate cancer diagnostic tests have been outsourced to community GPs. Or Swindon where all paediatric services have been sold to Virgin and very sick and disabled children haven't seen a paediatrician for over 18 months.

Anyway, you are on the case. Good luck.

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

User

Posted 26 Jul 2018 at 15:57

True, we now have a post code lottery based National Health Service.

Also, there are situations where private Hospitals cannot provide effective alternative treatment to match what is available in the best or more comprehensively able NHS Hospitals or these are few and far between. The patient can therefore miss out and perhaps is one of the reasons why some men seek more advanced and more quickly available treatment abroad. This is not a reflection on the hard working and competent NHS staff but rather due to insufficient funding and the way the NHS is organized and administered.

Barry

User

Posted 26 Jul 2018 at 16:35

Our NHS spending is considerably less than many other EU countries, i.e. the ones with no waiting lists, and the likes of Theresa May and Jeremy *unt keep saying they are putting more money in, around 3% p.a.

But they never mention that this is to cover a population increase of around 20%, all of whom are entitled to free treatment on the NHS. Many of whom have never paid a penny in.

It’s just down to money. And don’t get me started on doctor training places - thousands of kids with top A-levels apply to medical schools every year with limited places. Instead we rape other countries and steal their medics from them.

And if our indigenous students do qualify, as soon as they can they bugger off to Australia and the States where they are appreciated and can make loads more money!

Edited by member 26 Jul 2018 at 16:45 | Reason: Not specified

User

Posted 27 Jul 2018 at 18:43

Your hospital leaflet says 'If you have been told you have, or may have, cancer there are several other alternatives that may be available including radiotherapy and brachytherapy. Your Consultant will discuss these options with you.'

As you have said as long as it doesn't delay the operation too much. Hopefully they're processing your request rapidly and it shouldn't be your problem.

If they only offer Open Surgery it seems a bit limited and you'd expect quite a few people to want to go out of area.

Where I live urology surgery is done in neighbouring Preston, whereas my local hospital specialises in heart surgery. The trend is towards specialist centres and from what I read that's a good thing.

Edited by member 27 Jul 2018 at 19:16 | Reason: Not specified

User

Posted 01 Aug 2018 at 15:52

Well, I just had a nice lady from NHS England phone me, she confirms that there is "no problem" with funding the out of area treatment :-)

Now I just need the consultants to come back from holidays and get the ball rolling.

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

User

Posted 01 Aug 2018 at 21:13

Good news :-)

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

User

Posted 01 Aug 2018 at 22:44

Good news indeed. It does not always work for a patient but is certainly worth pushing for what you feel is your best option. I hope my case will be able to provide an example of this shortly, more in due course.

Barry

User

Posted 08 Aug 2018 at 14:05

Still waiting.....

I have a question, is hormone treatment always used with brachytherapy or is it depending on how good / bad things are?

I want to avoid a general anesthetic is it possible to have just the spinal block?

I know I can ask the specialist when I get an appointment but I like to be prepared.

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

User

Posted 08 Aug 2018 at 15:40

My understanding, which is based on my own situation and is probably incomplete, is that HT is only used with brachytherapy as a way of reducing the prostate and tumour size sufficiently for brachytherapy to be viable. Even then you are only likely to be offered this if only a little too large for treatment. I was well oversize and although they didn't actually say they wouldn't do it I was strongly advised against it. The Oncologist on that occasion suggested that no young man (under 70!) should choose HT if there was a viable alternative! Because side effects I suppose......

Nick

User

Posted 09 Aug 2018 at 17:50

Thanks Nick, I think I should avoid the HT then, my prostate is "only" 41 or 48cc ( I have two figures, one from ultrasound and one from MRI, MRI being the larger one and maybe the more accurate).

I am 75 and have had ED for several years now so any side effects can only make things a bit worse if at all :-)

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

User

Posted 09 Aug 2018 at 18:38

Not sure that Nikko’s reply is always the case. Some oncos will always want their patient to have hormones with brachytherapy; I think it is quite unusual now to have brachy on its own.

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

User

Posted 10 Aug 2018 at 17:27

Today I got a letter, 1st Class as well. I have an appointment to see someone in oncology on the 22nd Aug, things are moving at last.

I will make a list of things to ask.

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

User

Posted 05 Sep 2018 at 11:08

Yesterday I had a urine flow test locally, last week I had an ECG at my GPs, all in preparation for the forthcoming Brachytherapy.

I still have to go for the pre op tests at the Royal Berkshire and then maybe a date for the op.

I am now very keen to get this operation done and maybe start getting over any side effects in time for next spring. I have missed my main holiday of two months touring EU this year so I am looking forward to March 2019 to be able to go off again.

Flow test result was fine, ECG was OK, Stage 1 AV but Doc said nothing to worry about, not unusual for a 75 year old.

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

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