Problems with Funding for Endobronchial Valve Implantation..

[jankhan]

Hi..

I have COPD and having run the years long course of getting a proper diagnosis in February this year at St. James's Hospital in Leeds my consultant said that he would list me for Endobronchial Valves implantation and said that it would be done in April... When I next saw him in March he told me that he had been told not to list anymore patients due to funding issues.

Has anyone else had a similar problem affecting them..

It appears that other hospitals are still funding the valves and I'm wondering what the issue is that St. James's, Leeds aren't..

I've tried to find out more from Leeds PALS but they don't seem to have anymore information than I had.. they told me ... " It's a funding issue and discussions are going on." Meanwhile I'm told to wait until they get in touch with me.. My concern is that I may be waiting and find that it all comes to nothing..

It seems that the Administrators have more authority than the consultants..

Still, I do hope it happens ... jan

[scrobbitty]

That must be so disappointing for you Jan, I can't help you in this regard but offer my best wishes and hope that it doesn't all go to waste for you. Take care x

[Hidden]

Try Writing To North West NHS Commissioning Group And Ask Them ... Must Say Are Very Good

They Will Give You Long And Short Of It ...... Pals Well What Can A Say Unless You Want Pat On Back Suppose There Ok If Its Palliative Care

Anyway All The Best

[jankhan in reply to Hidden]

Thanks Daz for the information, I didn't know about the Commissioning Group .. I will definitely contact them .. One thing I have learnt is that if you don't ask then you don't get.. Therefore it's vital to know what's available..

jankhan

[ingy]

Think its the same all over. I was told yesterday there is no funding in scotland. Glasgow was doing it, but only trials which have now finished. However I was told that if suitable I could be sent to london, and asked if I was up for that. Of course I said yes.

Hope all goes well for you. ingrid.

[jankhan in reply to ingy]

Thanks Ingy, it helps to know what's going on for others in a similar position.. otherwise we are on our own and very much in the dark..

I wish you well and hope it happens for you soon.. which hospital in London would you go to..

Cheers from jankhan

[davy1192 in reply to ingy]

Hi was wondering if there is no funding in Scotland.Who funds the op in London.

[caroleoctober]

I am being referred to Cardiff for mine, I live in Gloucestershire. Keep smiling

Carole x

[meike]

Hi jab khan, I have also been attending st James since just before christmas, my last visit was two weeks ago only to be told that the funding had been suspended for endobroncial valves the reason being i was told is that other hospitals have been more selective about who they have given them too and st James have not been as selective hence suspended funding, I am still awaiting the decision weather they will be able to carry out lung reduction. I go again to see the consultants in July for that decision by the way they said i might be ok for one valve , but that seems to have gone out the window no money no valve is the bottom line in this case hope you have good news soon

[vittorio]

- Hmm, short of Funding, ? and yet this multi millionaire Government are spending FIFTEEN MILLION POUNDS A DAY on that war in Afghanistan, which they can never win, ........(killing people ) instead of helping the sick here - what a sad world we are living in ......

[Ratatouille]

Any more news?