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How do I get a vacuum pump on the NHS

User
Posted 14 Dec 2024 at 11:36

Dear Community


After several rounds of treatment and now cancer free for 20 months I am left with significant erectile dysfunction so am looking at trying a vacuum device.


I read that these are available on the NHS but my GP practice are saying they do not supply them and have not been very helpful.


Can anybody share advice on how to get one through the NHS?


Paul

User
Posted 14 Dec 2024 at 17:42

Hi Paul


My surgeon wrote to my local urology clinic to arrange an appt regarding penile rehabilitation and how to use a vacuum pump. Following the appointment they gave me a prescription request to take to my GP who approved it immediately. My local pharmacy sourced one within the week. I think your surgeon might need to get the process started.


 


Hope this helps.


 


 

Edited by member 14 Dec 2024 at 17:43  | Reason: Not specified

User
Posted 14 Dec 2024 at 17:53

This depends on your local area.


At the ICB level, there are 3 different policies:


The Bucks Oxon Berks ICB has a complete ban on prescribing them since 2016.*  Tough luck if you live there - you are getting substandard care in this respect which does not conform to NICE recommendations. No other ICB bans them.


In some ICBs, GPs can prescribe them.


Evidence has shown they are twice as likely to be used successfully if the patient attends a pump clinic to be shown how to use it. Hence, some other ICBs say it can only be prescribed by the GP when authorised by a hospital following attendance at a pump clinic.


Some GPs refuse to prescribe them even when told to do so by the hospital and allowed to do so by their ICB.


In a few cases, hospitals give them out after prostatectomy, but there's no such automated process for oncology patients (who are the majority of patients).


 


*As some of you know, I've been working through the relevant PPG (patient participation group) for 3 years to get this fixed in the Bucks Oxon Berks ICB. I get questions from patients wondering how it's going. We finally thought we were getting somewhere. However, at the last minute, the PPG completely screwed up and ensured there was no patient representation. The result was the report which went to the ICB was missing all the input we'd wanted to present to them, and missed the majority of cases where a pump should be offered. I cannot tell you how furious I was with the PPG, but so far, they have shown no indication of attempting to fix this. I'm really sorry for all the patients this ICB and PPG is letting down.

User
Posted 14 Dec 2024 at 21:08

Thank you for your reply and the insight into what the situation is with BOB ICB
I wonder if other people have any experiences where they have managed to turn the tide on local policies when it flies in the face of holistic patient care? 
Paul

User
Posted 15 Dec 2024 at 09:30

Thanks for the advice


It sounds like contacting my surgeon is also worth a try 

User
Posted 15 Dec 2024 at 20:48

Hi Paul


After surgery I was referred via the surgeon (not GP) to the Andrology Clinic. After the clinic meeting a letter was sent to my GP requesting the pump on prescription. GP prescribed it and I collected a couple weeks later. I had no problems getting the prescription. I live Hampshire if that helps.


Good Luck 

User
Posted 15 Dec 2024 at 21:33

Thanks for sharing your experience - I am getting the distinct feeling that this is a postcode issue as much as anything 


Maybe I should move to Hampshire!

User
Posted 17 Dec 2024 at 22:10
Perhaps I was lucky, but I was given an appointment with a Sexual Health Nurse 14 weeks after my operation where the vacuum pump was discussed and agreed. Unfortunately the nurse didn’t make contact with my GP however someone I knew who had undergone surgery at a similar time to me gave me the contact number for the SomaErect rep who completed the necessary form for me to give to my GP who was happy to prescribe the pump. I would suggest speaking with your cancer nurses to signpost you to the Sexual Health Nurse.

It would appear getting a pump is a bit of a lottery, but it helped me significantly.
 
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