FUNDING FOR OPERATIONS AND OTHER ISSUES

[johnwr]

I have recently been talking to a friend who has access to certain areas in the Health Service that most of us don't reach. Recently, there was a comment on the blog about the difficulties that Leeds are having with funding for lung operations. It seems that these problems stem from failures of several operations and the costs involved in correcting what went wrong. These issues are being resolved and the Leeds hospitals will resume the operations when negotiations are complete.

Otherwise, there are Centres of Excellence being set up in Bristol, Oxford, Cambridge, Sheffield, Birmingham, Leicester, Mansfield, Liverpool, Manchester and London. These hospitals are setting up Multi Disciplinary Teams which meet (or will meet) on a regular (probably monthly) basis. These teams that are already set up are actively recruiting and accepting patients. These sites are set up to be regional, so they are not just accepting patients from their local areas. For example, a patient from Gloucester should see the team at Bristol. These teams have the scope and ability to offer and perform Endobrochial Valve (EBV) placement or Lung Volume Reduction Surgery (LVRS) as required. These are Tertiary Centres, so referral should be via your respiratory consultant, although in some circumstances your GP may be able to make a request. All of this is through NHS, there is no private option for this in the UK at present. A current list of surgeons and hospitals is at :

pulmonxvalves.com/en/patien...

This list is likely to be reviewed over the next few months.

In view of the current situation about funding throughout the NHS, now would be a good time for as many people as possible to directly ask the BLF for information about this topic and anything else to do with COPD. As well as being a large charity supporting people with lung problems, and funding some research, the BLF is a lobbying organisation with links into the the Health Ministry and the NHS. As such we need them to show the Government that there is a need for COPD to have a higher profile within respiratory medicine, and heath issues in general. We need to push the BLF into asking why there are still serious delays in patients getting treatment which causes conditions to deteriorate, and ultimately cost much more to fix, or shamefully, death.

Treatments available. At this time NICE have only given approval for Lung Volume Reduction Surgery, and 'Zephyr' Valves from Pulmonx. There is one centre doing a trial using Nitinol Coils, but remember that the coils procedure is not reversible. There has been much on the internet recently about the use of an adhesive foam (Aeriseal). As yet, it is not in use in the UK, and most surgeons have questions about the severe reactions some patients get.

Some videos to look at ------

How Emphysema progresses and how Valves are placed

youtube.com/watch?v=7C6CGqX...(Not working as expected?)

Coils and how they work

pneumrx.com/products-techno...

[johnwr]

I'll be around for a while to answer questions.

[Jemma in reply to johnwr]

John

Many thanks for yet aother very informative post. Keep up the good work please.

Jemma

[scrobbitty]

Comprehensive blog there John, thank you. I recently asked about the foam option and was told they prefer the valves because they can be taken out, if necessary straight away, whereas the foam stays ad in finitum. I totally agree with your comments.

[johnwr in reply to scrobbitty]

Hi scrobbity,

The big problem with the foam is that if it goes seriously wrong, the only option is to remove that section of the lung surgically. Serious stuff.

[libbygood]

Thanks for that really interesting and useful blog John.

[KingoftheCocktails]

Good blog John

KOTC

[Lynne1955]

A really interesting blog John, thank you.

Lynne xx

[Hidden]

I dont have COPD, John, but always look out for your blogs. They are informative and clearly written. i have saved several in the past. Thank you.

[Hidden]

Very interesting blog and not just for those with copd to

Thanks

Julie xx

[ingy]

Thanks John, very interesting. I asked about valves and was told no funding in scotland, but may be able to go to london.

[Hidden]

Thanks for the very interesting and helpful blog.

I do hate the term "centre of excellence" - all hospitals and medical staff should aim for excellence. When I was at music college back in the 80s its principal also used that expression, it was awful.

I think they should call it "specialised in...." if they specialise in something eg lung surgery.

[johnwr in reply to Hidden]

Hi koala,

I agree. I don't like the term either, but that's what they call them. Though I must say that the surgeons that I have met in this field do all seem to strive for perfection. The lose use of the term over the past few decades has made it seem cheap. In these cases though, I think it may be deserved. They do include people from different disciplines, Surgeons, anaesthetists, technicians, and so on. Top dogs all.

[Hidden]

Who actually gets offered these kind of operations, is there an age limit etc.......................

Peta

[johnwr in reply to Hidden]

Hi Peta,

It's determined by by the patients condition, and the perceived improvement that should be obtained. Patients are mostly COPD Stage 3 or 4. The surgeons prefer that you don't have complications caused by other conditions, eg heart problems or other organ diseases. Age by itself is not an issue.

[jankhan]

Hi John..

Just read your post and I'm delighted with the information you've shared.. I posted about Leeds having stopped listing people for Endobronchial Valve Insertion.. In February I was told by my consultant that he would list me for the procedure which would be done in April.. he asked me to see him on the 1st March after having some pulmonary tests done, it was then that he told me that his manager had " Advised him not to list any more patients "..

I was really surprised as I was on the verge of having treatment were previously there was none.. This procedure is my only option ..

Since I have been trying to get some one to tell me WHY this was done and all I'm told is it's a " Funding issue " I have spoken with my GP.. who is very supportive and wrote to the hospital to express his concern but no one replied.. I have asked PALS to help but people are evasive..

You have cleared up so many Questions ..

I'm keen to progress .. can you tell me who I should contact if Leeds fail to resume .. I keep hearing that I should wait and they will contact me when the discussions are resolved but I'm concerned that I may find it was all for nothing..

Hence the need to explore other possibilities..

[johnwr in reply to jankhan]

Hi jankhan,

I understands your concerns and frustration. As these teams that have been set up cover wider areas than the 'normal' geographic limits for their hospitals, ask your GP to make inquiries from neighboring units, maybe Wythenshaw or Sheffield. Asking questions shouldn't hurt, and if the funding discussions for Leeds got bogged down and too protracted you could be in for a substantial wait.

[junespoon]

Really interesting, Most reassuring, maybe light at the end of the tunnel, thank you so much.

[jankhan]

Hi John..

I posted a message about funding issues at St.James's Hospital in Leeds some months ago to which you replied.. I know you attended a seminar there in march which was organised by Mr.Choudhri.. I've been seeing him to and after spending the past seven months contacting the business managers they have agreed to funding my bronchial valve implants..

I 'm due to have the procedure done on the 28th Nov and wondered if I could speak with you about a few questions, How does it feel with the valves in place are you aware of them.. If you are able to spend a few minutes I would keep it brief, I have read your posts but feel that the flow of a conversation often opens up thoughts that emails don't..

I hope that you are well and life is treating you kindly..

Regards from Jan Wasilewski ..