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Help us improve the standard of erectile dysfunction care across the UK

User
Posted 22 November 2016 13:56:36(UTC)

Hi everyone,

I work in the communications team at Prostate Cancer UK and I wanted to let you know about our erectile dysfunction campaign, which you may have already seen, and how you can get involved.

As a bit of background, our research shows that thousands of men affected by erectile dysfunction after prostate cancer treatment are being left with inadequate support. Just 13% of the UK’s local health commissioners provide the range of treatment needed to give men living with this distressing condition the best chance of recovery.

We don’t think this is good enough and we’d love to have your support.

Use our quick tool to enter your postcode and find out whether the services we think should be available to men are provided in your area. If they’re not, you’ll be able to send an email directly to your local commissioner or healthcare provider, calling for them to give men access to the vital treatment and support they need.

It would be great to have your feedback and hear what you think about our campaign!

You can also read more about the campaign here.

Thanks,

Hollie

User
Posted 22 November 2016 18:54:14(UTC)

No point me asking John to do this - we know the ED service we get in Leeds is brilliant. What isn't so great is that it is all down to one person - if she ever left, I don't know what thousands of Yorkshiremen would do :-(

It would also be fab if PCUK could run a similar campaign for access to mental health services / counselling after PCa diagnosis / treatment. Perhaps one for the future?

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


User
Posted 22 November 2016 19:40:22(UTC)

Strangely , my post code says I am in one of the worse places possible. However I got instant ED clinic and free pump with demo. My GP prescribed me with all PDE5 event doses of drugs and both injections.
The one thing I desperately needed was Cialis 5 mg which they wouldn't give me , but after a fight hey are now prescribing it.
I come under Hampshire West. Strangely the one thing they do provide is psychological services.




If life gives you lemons , then make lemonade
User
Posted 23 November 2016 15:31:31(UTC)

Hi Hollie

Umm.    I concur with Chris.  This doesn't at all reflect the advice I have been given.  See North East and West Devon  - 0 out of 5 services ?

So either the FOI request is operating on out of date info or the services are in place now.  

Can you clarify exactly what the survey / campaign is trying to achieve  ?   ie Seems the commissioners , quote  : -   almost 1 in 5 (17%) were completely unaware of the arrangements in their area?   

So are we saying the post code lookup only reflects the response from commissioners not the 'real world'

Is there an up to date database of all the services (not just those 5 categories)   currently expected from NHS for those diagnosed with PCa?    I have no idea how the NHS is structured.  

Regards

Gordon

 

 

 

 

 

 

User
Posted 23 November 2016 15:54:45(UTC)

Apparently,

here in Pembrokeshire, I can have access to brilliant services regarding E.D. However, I have had problems with E.D. since I got diagnosed with type2 diabetes. For many years, my wife got by with how things were. I used cialis, but it wasn't an exact cure, but did help.

Since I got diagnosed with PCa, my wife herself has developed her own problems and has no libido at all. This doesn't bother us too much. We still love each other, as we always have done. We are now intimate with each other in a different way.  Neither of us are upset with this situation, we just get on with life as it is. No problem at all.

 

 

Frank.

User
Posted 29 November 2016 13:33:46(UTC)

Hi Chris, Gordon,

Thanks both  for your comments.

Chris -

NHS West Hampshire CCG were unable to confirm that they provided any of the services other than the psychosexual service. We have sent a further FOI request to the Solent NHS Trust to try to establish if there are additional ED services they provide.

Gordon -

The FOI requests were sent out in June 2016 and NHS North, East, West Devon CCG were only able to confirm that they did not provide ‘daily low dose tadalafil’ as first line treatment and were unable to provide us with any information confirming if they offered the further 4 ED treatments and support.

Our ED campaign is trying to address the inequalities in ED treatment and support men receive across the UK so that men are able to access a range of ED services that they need. 

Thanks,

Hollie

User
Posted 29 November 2016 19:42:46(UTC)

Hi Hollie,

I used to work for a public sector organisation (not the NHS) and part of my job was to respond to FOI requests.

Now dealing with those FOI requests wasn't a central, let alone crucial part, of my role.  When I was feeling positive I found researching the facts required for FOI requests a welcome distraction to my main job, but when I was busy, or harassed, FOI's were a pain in the arse!

One of the problems is that they have pretty tight time deadlines, this is good from the journalists perspective, in that you know you are going to get a response by a certain date.  However for the poor sod to whom these tasks are delegated, it generally means there is scant time to gather facts, let alone check their accuracy.

My managers showed absolutely no interest in FOI, other than I would get the occasional query about how much we could legally redact, and no one ever checked the accuracy of my responses, basically I think that while some of them were pretty accurate, a lot of them were not.

So if the response from your membership is at odds with your FOI 'facts', I should trust the membership, because you might find the FOI requests were compiled by some administrator who had never been anywhere near the wards or out-patient clinics of their hospitals?

:)

Dave 

User
Posted 29 November 2016 20:07:42(UTC)

Great post Dave although for a number of years I also was responsible for FOI responses for my local authority and we were very careful to always make factually correct responses - if that meant diverting one of my teams, then that was what was expected. Like LAs, each NHS CCG will have a Caldicott Guardian so my thoughts on Hollie's post are that the CCGs didn't try very hard and the guardian would not be very happy :-(

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


User
Posted 29 November 2016 21:33:39(UTC)

Hi Lynn,

There is an interesting piece in today's Daily Telegraph, by Dominic Raab, now admittedly he is a pro Brexit Tory MP so you must bear that caveat in mind.

The article queries why the experts so frequently get things wrong?

He goes on to disclose that the Bank of England's "conjectural analysis team" measure the number of articles citing the words 'economic uncertainty' published in the Financial Times, the Times, the Guardian and the Independent.  This data is then used to forecast GDP, economic growth, inflation and future government borrowing.

It really does beggar belief that we pay these experts, six figure salaries, to basically read newspapers.

Then when you bare in mind that the journalists are basing their stories on 'facts' gleaned from FOI requests, it gets rather disturbing.

There was a similar bit on the radio the other day, apparently someone at the NHS measures how many times the word 'flu' is tweeted, and they reckon that is the best way of predicting an epidemic.

Personally I just wish there was a newspaper journalist who could predict tomorrow's winner in the 3:30 at Doncaster, but then again if he picked too many winners he would no doubt be recruited onto the Monetary Policy Committee?

:)

Dave

 

User
Posted 29 November 2016 21:47:02(UTC)

;-)

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


 
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