Nhs operation waiting time.

[Fiocena]

So far I've waited 8 years for my operation. I understand that to make a claim against the nhs, I would have had to have the operation first to show the difference it has made to my life before proceeding. It's hopefully going to be this year, what I would like advice on is which law firms would be best for me to approach....a no win no fee or maybe an independent firm. Any good experiences would be gratefully received, thank you.

[Guest]

No win no fee, be very careful, study all the small print before signing, there are no free lunches. *

[Fiocena]

Thanks for the response....this is why I'm asking...I've spoke to others before and they seem to think I'll be able to get at least 6 figures, i don't mind paying for services but I don't like getting ripped off.

[MIKE770]

NHS Rip-Off??? * well money rip off??? did you follow any complaint procedures??? 6 figure = see what you are up to motive???? like it or lump it my friend I been waiting new knee and hip for a few years, so many people 2 out of 5 complaint the operation made things worse.. * a dangerous area you are entering if you are not careful.... a daughter of mine ended up in a coma for over a year then dies, no compensation offered after years later consultant under investigation?

[Guest]

Brothers Wife. Simple operation Cist removal, he punctured her bowel, Surgeon on rounds was warned by a junior that bowel puncture was possible the problem, end result, poisoned bowel dead, Brother in law, unable to breathe at night, into Hospital, result, dead put in an induced coma and left with no breathing machine, but on the bright side I had a hip replacement all perfect.

[Manxman]

As a former NHS manager I find this interesting.

Eight years is a very, very long time to wait. I'm assuming it's either because your clinical need for the operation has a very low priority or it's in some way contingent upon something else (like the availability of a transplant donor)? Or it could just be some sort of admin error at the hospital.Have you not had a satisfactory explanation for the delay from your hospital? (Or have you asked your GP why the delay?).

What would you base a claim on? I'm not sure that simply waiting for eight years(!) would be enough to base a court claim - it probably ought to be but I'm not sure it is. Normally you would have to establish that the hospital had been negligent in some way and that you had suffered some quantifiable loss as a result. I suspect that if you brought a claim the hospital would argue that it had satisfactory systems in place to manage their waiting lists and that the demand on their services, the availability of resources and your clinical need justified an eight year wait.

Of course, if you've been waiting eight years because of some sort of error in the way the hospital manages its lists (and it's an error that would amount to negligence) and you've suffered something like pain, or reduced mobility, or loss of earnings as a result, you might have a claim. But then the question may arise as to why it's taken you eight years to discover it's an error.

Are you saying that a no win no fee lawyer has already told you that you have a claim that might be worth six figures? Generally, NWNF firms will only take on cases they think they can win - otherwise they'd never make any money. If this is so, it might be worth pursuing, but remember they'll want 20% to 30% of any award you win. You could just engage a solicitor on a normal "pay as you go" basis, but you'd have to pay their (rather large) fees if you lose.

On the bare information you've given above I don't see what your claim would be. But don't let that stop you seeking legal advice.If you do, make sure you fully understand how the legal work for your claim will be funded.

(Unlike many of my former colleagues I'm not somebody who believes that the NHS should not be sued. If somebody suffers loss as a result of NHS negligence they should be able to claim compensation. I'd certainly sue the NHS myself in the right circumstances - I'm just not sure these would be the right circumstances).

[Fiocena]

As a former NHS manager I find this interesting.

Eight years is a very, very long time to wait. I'm assuming it's either because your clinical need for the operation has a very low priority or it's in some way contingent upon something else (like the availability of a transplant donor)? Or it could just be some sort of admin error at the hospital.Have you not had a satisfactory explanation for the delay from your hospital? (Or have you asked your GP why the delay?).

What would you base a claim on? I'm not sure that simply waiting for eight years(!) would be enough to base a court claim - it probably ought to be but I'm not sure it is. Normally you would have to establish that the hospital had been negligent in some way and that you had suffered some quantifiable loss as a result. I suspect that if you brought a claim the hospital would argue that it had satisfactory systems in place to manage their waiting lists and that the demand on their services, the availability of resources and your clinical need justified an eight year wait.

Of course, if you've been waiting eight years because of some sort of error in the way the hospital manages its lists (and it's an error that would amount to negligence) and you've suffered something like pain, or reduced mobility, or loss of earnings as a result, you might have a claim. But then the question may arise as to why it's taken you eight years to discover it's an error.

Are you saying that a no win no fee lawyer has already told you that you have a claim that might be worth six figures? Generally, NWNF firms will only take on cases they think they can win - otherwise they'd never make any money. If this is so, it might be worth pursuing, but remember they'll want 20% to 30% of any award you win. You could just engage a solicitor on a normal "pay as you go" basis, but you'd have to pay their (rather large) fees if you lose.

On the bare information you've given above I don't see what your claim would be. But don't let that stop you seeking legal advice.If you do, make sure you fully understand how the legal work for your claim will be funded.

(Unlike many of my former colleagues I'm not somebody who believes that the NHS should not be sued. If somebody suffers loss as a result of NHS negligence they should be able to claim compensation. I'd certainly sue the NHS myself in the right circumstances - I'm just not sure these would be the right circumstances).

Thank you for your lengthy reply it is much appreciated. I will try to explain a little more, i was diagnosed aged 38 (it took aprox. 7 years to diagnose) with minimal change chronic pancreatitis at the end of 2012. I did not complain on the length of time it took, chronic pancreatitis can take up to 10 years to diagnose. I was a paediatric nurse doing a post grad in mental health when I finally became too ill to work in 2006.

I was told by the best pancreatic surgeon in the country that I needed a total pancreatectomy with autologous islet cell transplant. Basically they remove your pancreas isolate the islet cells and transplant them into your liver. The operation cost is aprox £250,000. He then told me that pre 2012 (agenda for change) i could have had the operation, no problem, but the nhs are changing the way it was funded and allocating its own pot of money for that particular operation. So we had to wait for the nhs to decide. He said that it was pointless requesting the money individually because he has never had anyone actually win the bid. So over the years the nhs' various boards, that have to be all checked off, to make sure of course it's cost effective and safe ect, have bounced it back and forth coming up with ridiculous excuses over the years. My surgeon has worked tirelessly doing more research to prove the operations worth, i have quite a good relationship with him and over the years he has told me quite a few interesting facts that happen behind the scenes. One of which was the first patient excepted for individual funding, a very well known MPs cousin, a gp, of which my surgeon and his whole team were flown up north to perform the op....this has probably annoyed him the most and I'm sure he would gladly tell anyone these facts, if asked. He thinks it's to do with cost, although it is cost effective, but as he explains, there's only about 40 people in the UK that need it, so on the grand scale of the NHS budget it's not a lot of money.

Finally on the nhs birthday in 2018 they announced that they had finally decided they would allocate funding for it, they then announced that they would need 4 centres to do it in the u.k...north, south, east and west. Any centres that wished to make a bid had to by April 2019...the disheartening thing about this was that there's only 4 centres that could actually do it...Newcastle, Leicester, Oxford and kings London. My surgeon was annoyed again, at this ridiculous idea that the 4 centres had to put a bid in to the nhs and the 4 centres of course won the bid. So I have now waited since April 2019, more bureaucracy...now it's the hospital.

I could go on for hours about what has happened and what I've found out. I've contacted MPs, had various letters from house of parliment... contacted the NHS....again ridiculous answers and on occasions responding with totally different answers to what i'm asking.....seemingly to brush it off...even a Lord. As you can see it's the actual nhs that has been the problem, not any individual or hospital, it is very complicated. My need for the operation isn't the issue, a donor isn't the problem it's autologous* (from myself), the nhs is the problem. The people on the NHS boards are the problem, they use ridiculous excuses and did you know the majority have no knowledge of medicine let a lone the human body. The majority also are on the same boards....So when it's past through one it goes to the next and the members of the board are discussing how haven't they already done this blah blah blah...My operation is to ultimately stop the agonising pain and sickness I go through everyday, Labour is easier. The islet cell transplant is to stop me from becoming a brittle diabetic...I would die without a pancreas, the diabetes would be unmanageable. The islets graft onto the liver and then start producing insulin, the majority are not diabetic after the operation. The final excuse was that the board could not understand how an islet transplant would help with the pain of the total pancreatectomy....should a member of an nhs board understand what they are reading, all the evidence is there and they come up with these ridiculous excuses every time, the amount of time and money wasted in just this part of the NHS is mind blowing...it's there in black and white it actually is laughable really.**

I did speak to a solicitor no win no fee approx. 4 years ago. I was told then that it could be 6 figures but I had to have the operation first to show how much an improvement it made to my life, i am now virtually house bound, if I have any appointments I have to not eat for 4 days prior, so I know i can cope. I can't digest anything, my pancreas still produces insulin but the longer I wait the islet yield will be less and one day the operation will not be an option.* If i had a famous MP as a cousin I would have been mended years ago.

[Manxman]

Ah...that all sounds very difficult.

Unfortunately I'm not at all sure that you are likely to be able to sue the NHS as from what you say it's not that you've been on a waiting list for eight years,*rather that it's a procedure that the NHS (or your local clinical commissioning group) has previously decided not to fund.* Have I understood correctly?

I may be wrong, but I'd be surprised if you could sue the NHS for not giving you the operation (sooner?).* The NHS has limited resources that it has to ration among many competing demands, and there are always going to be things that can't be funded.* I'm also a bit surprised that a "no win, no fee" solicitor would suggest that it might be worth up to 6 figures in compensation.* (Of course "up to 6 figures" includes the number zero*as well as*every other number up to 99,999).* Did they seem keen to take the case on for you?

What does your GP and your local clinical commissioning group say about this delay?* Have you tried an "Individual Funding Request"?* This link gives an example:* https://norwichccg.nhs.uk/your-healt...nding-requests

If you do want to explore suing the NHS then you either need to see a "no win, no fee" solicitor, or engage a solicitor on a normal "PAYG" basis.* The advantage of NWNF is they won't take you on unless they think you'll win, but they'll take 25% plus of any compensation.* And even if you lose you may be liable for their expenses and the NHS costs.* A "PAYG" solicitor will take you on if you instruct them to, but you have to be sure you understand how they'll charge you, and you'll have to pay their fees even if you lose.

I'd certainly seek legal advice.* Some firms will give 30 minutes free consultation to help determine if you have a case.

Good luck

(PS - looking at NICE guidance the autologous transplant you need wasn't completely ruled out was it?* https://www.nice.org.uk/guidance/ipg274

Apologies if I've got that wrong - I'm not used to NICE guidance so may be misreading it)

[Fiocena]

Thanks again for your reply, it is very difficult. The nice guidelines have never really changed over the years, just updated. The op wasn't ruled out...you could continue to apply for individual funding, my MP wrote and suggested this. My consultant said that it was pointless applying because no one that he knew (and he's the lead consultant in the uk) actually got the funding...under the grounds that we have not got extenuating circumstances over the other 40 people that needed it....oh but the mps cousin that I mentioned above got it....I wonder what her circumstances were....believe me not that much different...The funny thing is she was in a group I was in then she disappeared...then my consultant told me of his annoyance and it was her.

The crazy thing was, halve way through the years, they decided to change it back to the way it was....then miraculously after a year or 2 it was back on. Using delaying tactics all the time. After all this time their is aprox halve of us left needing the op...I imagine they're deceased or their islet cell function has diminished.


I also know that they have been performing them in Oxford as of last July. I've sent an e-mail to my nurse specialist but no news as of yet. I just feeling like I'm constantly waiting for a taxi lol.

[MIKE770]

Area of concern: Question:??? How do consultants etc get paid? by each operation? or a salaried wage, as if they are paid a salary and all staff in operating room get salary, then the operational cost would be products only as consultant/surgeons already paid, how does the NHS operate if different, because delays seem to be contentious? going private for those rich people are in]/out within weeks??

[Fiocena]

Area of concern: Question:??? How do consultants etc get paid? by each operation? or a salaried wage, as if they are paid a salary and all staff in operating room get salary, then the operational cost would be products only as consultant/surgeons already paid, how does the NHS operate if different, because delays seem to be contentious? going private for those rich people are in]/out within weeks??

Yes you're right, but in my case the rich and famous* (bi-proxy) get nhs individual funding granted. It truly beggars belief. I can't wait to get better, as a nurse I am going to try and tackle this obvious problem within the NHS, maybe get something published in a reputable nursing magazine, try and help others going through this difficulty with a rare disease.

[Manxman]

Area of concern: Question:??? How do consultants etc get paid? by each operation? or a salaried wage, as if they are paid a salary and all staff in operating room get salary, then the operational cost would be products only as consultant/surgeons already paid, how does the NHS operate if different, because delays seem to be contentious? going private for those rich people are in]/out within weeks??

I suspect it's the NHS opportunity cost that's the problem.* Whoever the NHS gatekeepers are in this case (not clear to me if it's the local care commissioning group or NICE itself) they have effectively decided that their surgeons and other operating resources are "better spent" on procedures that benefit other people rather than the one the OP needs.

Not an uncommon predicament in services funded like the NHS where demand for the provision of health services outstrips supply, and the provision of services has to be rationed in some way.

*

[Manxman]

Hi Fiocena - sorry but you seem to be in a real hole here and it's not clear what the way out is.* If you are engaged with your GP and the consultant and they're doing everything they can, I'm not sure what else you can do through the NHS.

Have you tried getting the media involved?* And by that I mean a national newspaper or the BBC.* I know it's not strictly a consumer issue but somebody like Watchdog might be interested (or You and Yours on Radio 4).* I mean, your story is actually a curious one and full of human interest.* I would have thought somebody might want to publicise it.* (What have you got to lose?*).* I think I'd try contacting the health editors/correspondents of some of the newspapers.* I'd go for The Times, The Guardian etc, although the tabloids would have a bigger circulation.

Also try a solicitor, but as I've said before, I don't think you've got a case - although I may be wrong.

Good luck if there's a*possibility of having the op this year.* Hope it goes well.

** "What have you got to lose?"* Hmmm.* I suppose if you really have a likelihood of getting the op this year, you may not want to rock the boat. (?)

Anyway, good luck.