Really Annoyed !

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.

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

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

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

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

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.

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

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,

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

Ray,

I think if you were to take a poll on here you would find that most people would favour extending their lives and those of a partner even with loss of some quality of life. Were it not so, instead of having treatment which we know will lead to varying side effects, men would decline treatment and continue to enjoy all their pleasures for as long as possible which a few do. As regards encouraging men to have PSA tests and scans and the cost of so doing, it has to be remembered that successful outcomes for cancer patients in the UK are among the worst in Europe. This is partly down to late testing and scans. We have had men on this forum who have had bad experiences due to short comings including those of some doctors/specialists. Money spent on early diagnosis and early treatment, can where appropriate, save more expensive and further life changing treatment later on, so money well spent.

Fiona,

I think overall that at the sharp end the clinical staff do a great job in difficult circumstances. I witnessed this when I was hospitalized earlier this year. That not all patients could be attended to as quickly as they wished was due to insufficient nurses and the fact that some of the equipment was faulty and in short supply so items had to be carried from one bay of the ward to another. I am sure you are right in what you say about areas where money is wasted including external dabbling, well intentioned though it may be. One would have hoped that the large scale procurement would have resulted in lower unit costs being negotiated. To add to this is the high cost of some of the administrators, 'fat cats' as Diesel said. This is not confined to the NHS of course :- http://www.dailymail.co.uk/news/article-3309596/The-shocking-scale-fat-cat-pay-public-sector-exposed-today-major-Daily-Mail-investigation.html

Hi, 

Finally received my Pump Clinic appointment (if it still exists by then) for February.  If the NHS Board doesn't feel there is a need for this service then I think that waiting over three months for an appointment indicates that this is a problem that a lot of men need help with.

Steve

I've just read your last post (and previous re delay re pump) with interest as I have my first ed clinic in a few weeks.

I had to see my GP re this and she was annoyed that my Onco team had not referred me before.

She thinks I should be offered a pump as a primary requirement and medication secondly.

My RT friend from hospital had his first appointment last week and was offered sidenfil. And go back in 3 months.

He was not offered a pump. I'll see what happens when I go.

I think privacy at home is a must. Already I am 'planning' suitable times in my mind to avoid interruptions !

Anyway good luck and half term will soon be over.

John

Glad you finally got it Steve and especially glad for you both that it appears it will work for you.

Have you got a lock on the bedroom door? Easily explained to daughter that you need certain times to yourself. Even better is a simple door stop, the rubbery kind that can just be tucked under the edge of the door. IT would stop anyone barging in on you at the wrong time.

Edited to say I realised after I posted that you probably meant privacy for both of you, whereas I was thinking in terms of "practise" !

Half term is only for a week, so you can be "honing" your skills eh?

Edited by member 14 Feb 2016 at 09:14  | Reason: Not specified