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Really Annoyed !

User
Posted 08 Nov 2015 at 01:24

Hi,

I heard at my local PCa Support Group meeting on Friday evening that the doctor who runs the vacuum pump clinic in our hospital is having to face an NHS medical board on Tuesday to convince them that they should continue to fund this service.   Where do they expect you to go; some sleazy sex shop to buy one off the shelf? 

I find this really disturbing.  Don't they realise the hell, men with PCa, go through with their treatment, without having to face the humiliation of losing their basic masculine function. 

Many members of the general public think it's a joke when men loose their ability to have an erection.  They don't realise the distress caused by this but also the stain the problem can put on relationships.

They really need to be aware that, cost cutting like this, could cost more in the long run when they have to deal with the cost of providing counselling and support services.

Steve

User
Posted 14 Feb 2016 at 03:03
Hi,

I just thought I should update this thread as I started it.

I have finally just received my pump yesterday, after originally asking my GP if I could have one back in July.

It works really well. Just a shame half term has just started as it's difficult to find a place to use it without being disturbed after 5 or 10 minutes by my daughter or her visiting friends.

Steve

User
Posted 08 Nov 2015 at 17:44

Oooooh Ray -- you are starting WW3 !! I actually think they don't offer " breast implants " on the NHS . They re-construct the best they can and offer to " tattoo " a nipple if need be . I get where you are coming from entirely being a sufferer , but its kind of different . Many women are left       " scarred for life " by breast surgery on the NHS , and like us they hope they are in a loving , solid , happy relationship so its not so awful to cope with.
Chris

Edited by member 08 Nov 2015 at 17:46  | Reason: Not specified

If life gives you lemons , then make lemonade

User
Posted 12 Nov 2015 at 08:45

Hi Fiona,

Thank you for posting. I worked in the public sector for over 25 yrs. Reorganisation, futile projects that failed, I could go on.One sad example recently. A patient was transferred from one hospital to another, and was told all the scans and tests would need to be repeated at the ' new hospital' The repeat performance was exactly the same as the previous work.Personal experience, my husband had a scan, and all the information was sent to the wrong place, and we were advised it was lost, and I was made to feel I was out of order being assertive and ensuring it was found. I am trying to persuade our surgery to look using at e-mail as a method of agreed communication. Teresa May has access to all our personal information, so, will my husbands prostate cancer be interesting reading? I suggest not.

The monies wasted in health and the public sector are of a grave concern to me, and to those of us who have seen the misuse of funds.

Especially when our loved ones require support, treatment and compassion.

Ouch, I should stop preaching now maybe.

Leila.

 

 

 

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User
Posted 08 Nov 2015 at 13:19

Sorry to hear this Steve.

Would it not be possible for a petition to be put together for the doctor to take with him. If every man at the Support Group (and their partners too) were to sign it then maybe he would get the necessary attention.

We can't control the winds - but we can adjust our sails
User
Posted 08 Nov 2015 at 13:25

Hi Sandra,

We did that at our meeting which is how I found out about it.

Wish I could be with the doctor when he meets the board, I'd like to say a few things.

Steve

 

User
Posted 08 Nov 2015 at 14:09

Steve

I've no idea on the answer to this: as men are seemingly reluctant to seek help is the clinic well attended? I'm thinking if not it could be why they might be asking questions. It might be a bit late but with your background could you reach out to non- attending guys/gals? Now there's a project for you :-)

Ray

User
Posted 08 Nov 2015 at 14:22

Steve this is awful -- I just cant believe it to be honest . Whilst i'm far from cured I have had every inch of support available to me from the day of the operation . I'm so lucky . But you are right -- how can they cast you off into the sunset without an erection ?? Many of us can talk about it and deal with it ourselves and chase our GPs up , but many sit alone in silence which is just unacceptable in this day and age .
If you should need any help or leads to get the professional equipment , please feel free to ask mate. It doesn't cost the earth.
Chris

If life gives you lemons , then make lemonade

User
Posted 08 Nov 2015 at 14:33

Can understand why you feel so angry, it seems this is going to be how it is, more and more services questioned as to their 'value for money'. Not just dreadful for men, but for their partners where a loving sexual relationship has been the norm before PCa and the side effects of treatment as many ladies who have posted on the site can testify. Steve, I hope these idiots see sense but ultimately they are pressured by govt policies and feel there is little alternative. No wonder people feel the need to take direct action just to be heard !

 

Fiona x

User
Posted 08 Nov 2015 at 16:34

Thanks for your messages.

Ray, I believe the clinic is only held on one day a week so I think it must be quite busy because I've been waiting a month for an appointment!

Steve

User
Posted 08 Nov 2015 at 16:50

If its the same girl that was running mine , she's probably booked solid till June ;-))

If life gives you lemons , then make lemonade

User
Posted 08 Nov 2015 at 16:50

I am sorry that it may mean that men will not get the help to artificially obtain erections but this has to be looked at on a cost basis by those funding the appliances . Budgets are so tight that there is constant pressure to make savings in order to be able to provide essential treatment and services. One way is for the Government to increase funding but this means increased taxation, economies elsewhere or even more borrowing which has to be repaid with the risks of even more severe cuts in the future.

We already have to pay for basic dental treatment and if you need more than this it means going private, directly or through insurance at considerable cost as I can personally attest. Yet you use your teeth every day of necessity, usually more than once.

This has to be viewed realistically.

Barry
User
Posted 08 Nov 2015 at 17:06

Ladies I don't want to start WW3 here so read this as I meant it, comparing not attacking.

I'm not sure on this but are breast implants for mainly emotional reasons? If so isn't ED on a par with at least that.The government can find, quite rightly, resources for that so why not ED?

With such long waiting lists the demand is there


Ray

Edited by member 08 Nov 2015 at 17:07  | Reason: Not specified

User
Posted 08 Nov 2015 at 17:40

Absolutely no offence, Ray.

ED is a quality of life consideration for many, affecting emotional health as well. When my partner and I were unable to have sexual contact, because of ED and loss of libido , it was one of the most devastating things and profoundly affected our relationship. I will never forget, a few days before he died, he told me he didn't feel close to me anymore. Although treatment can extend mens' lives, I used to feel there seemed to be little available for the unwanted side effects of the disease and treatments unless you really chased them up, no one ever mentioned ED and what impact it had on us whilst my partner was ill, think I relied on this site as usual !

Fiona.

User
Posted 08 Nov 2015 at 17:44

Oooooh Ray -- you are starting WW3 !! I actually think they don't offer " breast implants " on the NHS . They re-construct the best they can and offer to " tattoo " a nipple if need be . I get where you are coming from entirely being a sufferer , but its kind of different . Many women are left       " scarred for life " by breast surgery on the NHS , and like us they hope they are in a loving , solid , happy relationship so its not so awful to cope with.
Chris

Edited by member 08 Nov 2015 at 17:46  | Reason: Not specified

If life gives you lemons , then make lemonade

User
Posted 08 Nov 2015 at 18:59

Chris thanks for the explanation and correcting my thinking

Fiona, thank you. I didn't chase up ED help up as I was not alone in being told the one you've probably read before 'dead men don't get erections' and of course the removal of desire due to Zoladex didn't help fight that. So I found some comfort in thinking other guys gals put up with it thus so should I. I really don't want you present guys and gals to go down that route so fight for help folks.

Ray

p>
User
Posted 08 Nov 2015 at 19:30

Leaving aside the emotional argument, erections are essential to reduce or prevent penile atrophy. Solid reason for the supply of pumps for those who cannot manage an erection naturally so that the blood supply can be maintained.

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User
Posted 08 Nov 2015 at 19:36

The thought of me being able to correct someone's thinking is awfully frightening tbh. Great advice though. In this day and age every man should be able to talk about his erection ( or lack of ) and forums like this help promote that. And boy do we need to fight to ensure the treatments and meds are there available to us , especially when we have put into the system for many years probably.

If life gives you lemons , then make lemonade

User
Posted 08 Nov 2015 at 19:40
For what it is worth I can add my personal thoughts.

ED is not unique to PCa many Men with Diabetes amd some other "manageable illnesses" who have to take medication to control their illness, also suffer. If their GP is not totally on the ball these men and their partners are never referred and given no counselling, no ED clinics and are frequently told if Viagra doesn't work or you can't tolerate it then that's it. Put up and shut up.

I totally agree that it is outrageous that any Man with this problem, for whatever reason, should not be given every help possible if a fully active sex life is important to them or their partners.

As for breast reconstruction for women following a mastectomy (single or double) then to some degree I can understand what Ray has said. No you do not need breasts to have sexual intercourse indeed some women are totally flat chested to start with, but they don't carry huge scars, or the loss of nipple sensitivity and sexual arousal that can bring. Nor the feeling that they may have lost some femininity following their surgery.

Other women can accept that their shape may have changed, they may carry scars but they are content and proud, probably made confident by massively supportive partners.

So much depends on the perspective of the individual concerned and sometimes, sadly that just possibly may not include the view of their partner.

A good post Steve and a good point to debate.

Xx

Mo

User
Posted 08 Nov 2015 at 20:30

hi steve
it seems it is another nail being hit into the NHS and men who suffer with ED must admit it is not something that has crossed my mind, as all my feelings are out of the window with the constant HT with zoladex

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 08 Nov 2015 at 21:45

There is no 'magic money tree' as some people believe that can be plucked at will. If in a position to have to make a choice, would you further restrict drugs that extend normal lives of patients (some of them with PCa) and let them die early or spend the money on pumps etc? Patients can rarely afford to buy some of these very expensive drugs if not supplied by the NHS and will die early but many can afford the sexual aides which cost less than a budget holiday these days. As has been mentioned, there are other problems that give rise to ED and from around the age of 50 men in greater numbers become impotent. There are other claims on the NHS which some would advocate more being spent on such as IVF treatment, as not having the ability to have children can affect women mentally, whilst others would favour fewer cycles and less cost.

Unfortunately, times are hard and choices have to be prioritized. So many people want so much that increasingly more are being disappointed, whether it's on nurses pay, tuition fees, tax credits, closing local hospitals, police reductions or reduced local services etc, etc. Certainly it's right to fight for what you believe in in a civilised way but accept that sometimes others may judge priorities differently.

Barry
User
Posted 08 Nov 2015 at 22:15

Barry

It is a very difficult choice. Is it better to extend the life of a relative few or give a higher quality of life to many more? But could you do both by reducing NHS spending. For instance on here how many times are folks encouraged to demand scans and follow up shorter PSA tests that medics feel are not warranted. It all costs money.

Ray

User
Posted 08 Nov 2015 at 23:06

Barry,

 

You are right, of course there is no 'money tree'.

I worked in the NHS for twenty nine years and what made me livid was the sheer waste of money, constant reorganisations, procurement, you name it, I saw it happen, all funds which could have been better spent directly on patient care. In my workplace, any new office equipment had to come out of an extortionate catalogue, a year before I retired, a fortune was spent on a 'community redesign' project which fell apart eighteen months after instigation and then there is PFI where so many hospital buildings are excessively mortgaged for years. Private Eye magazine regularly cites examples of huge amounts of cash going to dubious private companies and consultancies, that's why I get so angry. Those wasted funds could no doubt pay for many initiatives of direct benefit to patients. It is about time that there is more transparency as to where taxes for the NHS go, I daresay it would be a real eye opener ! Instead of services being pitted against each other for money, there are plenty of savings as I've cited which could be made but sadly, they are the last things to be challenged.

 

Fiona.

Edited by member 08 Nov 2015 at 23:07  | Reason: Not specified

 
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