I've gone into complete panic mode. Verging on hibernation mode. Please help.

[JackieandJudy]

Dh is ill, and has been since just after we met. Over the years we've had so much to deal with, and I think it would be fair to say that I have dealt with most of it reasonably well (I'm generally ok at coping when things are going wrong, it's usually afterwards I have a bit of a wobble).

The situation is slightly different this time in that, instead of finding ourselves in the middle of an emergency, he has a planned operation coming up for next Monday. And I'm so bloody scared. The odds we have been given are not good. I can't stop thinking about Monday and am constantly doing the "what if ...?" thing. The elder dc know it's serious stuff coming up and are scared themselves, hence are looking to us for guidance and reassurance. I've tried but today I'm all out of trying and have locked myself in the bedroom. Smallest dc knows Dad has to go to hospital but is oblivious of the wider implications.

I'm shaking constantly. I keep crying at random moments (yes, that was me in Sainsbury's who cried when I dropped the apples!), I can't do this for another week. But I have to. I don't want to talk to rl friends as I will cry and I don't want anyone feeling sorry for me anyway.

But I'm happy to listen if any of you lovely ladies have any ways to help me get through this week, and possibly after.

Night has fallen here in NZ JandJ and you and yours are in my evening prayers. Regardless of faith, there is something concrete I would like to remind you of, and it is that surgeons are sticklers for getting it right. They only have the one procedure to concentrate on at a time and they strive for the best possible outcome every time.

Thinking of you and sending loads of comfort for the agony of the wait. Don't forget to breathe out too.

Checking in JandJ to say that you and DH are still in my thoughts. I am sure that every minute will feel like an hour. Feel the love and prayers around you and be assured that DH is in the best hands today - with the power of prayers and postive thinking around him too.

Also checking to say you, DH and DCs are in my and my DH's thoughts today.

Hope you can feel our collective virtual presence and support and gain a smidgen of comfort from it.

Praying for you all too JandJ xx

(who or what could possibly resist the love on this thread!)

It is now 4.13 pm in the afternoon in the UK. I have spoken to every member of my family and friends I could muster this afternoon and the prayers should be floating to your DH now JandJ.

It is time for my lovely Border Collie to do his last LONG walk of the day so we will head for the clearing again. I have a feeling we have to get more prayers in the prayer bank for DH's recovery period.

I'll catch up in a couple of hours when we are back home.

Delurking to say that my thoughts are with you and your family.

Sending much love and hoping that today has brought the right result. Thinking of you.

I sat on the beach in the sunshine today thinking of you (all of you actually), but of course, particularly J and J. I hope things have gone well today and the surgeons have been as positive as they can be. Will check in again later tonight.

And once again, it's a new day. JandJ, I want you so much to say those words. The circle has gone a full turn again and your worldwide network is with you whatever the time of day and whenever you need us. Springydaffs is right about the love that is here for you and yours.

You're all expending so much positive energy and prayer, I almost feel as if I've let you down - it didn't happen AGAIN!!!!

Admission last night went fine, dh was first on the list this morning. By 6 this morning he'd been shaved, gowned and had pre-op. Nobody appears to take him down to theatre until at 10.30 the anaesthetist arrives to say the operation is cancelled - because they don't have the right type of blood! The surgeon appears after about two hours, impervious to dh's entreaties to tell him what he thinks of this farcical situation. Apparently it's once again "not his fault" and he was all ready to do the list but someone hadn't organised the blood - and, by the way, "I'm on holiday now until 3 September". All he could keep saying was how frustrating it was - but I think he meant frustrating from his point of view.

(The haematology notes were not in dh's file, but as another doctor told us later, they shouldn't have needed those particular notes, there was more than enough info in the file they did have.)

It was at this point that I disgraced myself by crying and begging Dr Dismissive to consider our situation, and to see how very much more than "frustrating" it was, how we and our children had been through the wringer, how we'd been living under the constant threat of losing our lynch pin, how Dh had a life to lead and a course to attend, how we're too old and dh is too ill to waste any more time, how we'd been led to believe this operation was urgent. I begged him to personally call the consultant haemotologist (who he'd apparently left a message for) and to "please be on side for us". At the end of all this, Dr Dismissive looked at me with great distaste and said "yes, it's very frustrating, so 3 September it is then".

Shortly after, one of the kidney doctors who dh knew came to see how dh was doing. He was appalled on our behalf, and suggested complaining to the Chief Executive of the Trust, the Director of Clinical Medicine and the Head of Surgery. He said that we may be able to claim some financial compensation for missing out on Bar School - but as I know you'll all realise, it's not the financial but the emotional aspect of all this which is killing us. He also apologised and said "I know that doesn't help much", but actually, considering the attitudes of the cardiac docs - it helped a lot.

The dc were distraught when we told them, yet again, what had happened - ds2, in particular, was angry. Dh has this afternoon rung the Clinical Director of Medicine (who, many years ago when we first moved to this area, was the doctor in charge of dh's care, and who seems to regard dh highly, and who has given dh his mobile number) - so he is already on the case. And the Head of Surgery is also one of dh's fans (having carried out serious surgery on him at least twice before and been taken by dh's bravery and fortitude). So that leaves the Chief Executive.

I'm so sorry this post has been all about me and mine, I have read all your kind thoughts but I'm kind of fielding phone calls, and a friend is dropping round at 8, so I'm rushing but just wanted to update you all. I will be back.
x

I am open mouthed. It's unbelievable. I am very very angry on your behalf.

JandJ, this is absolutely bloody unforgiveable!!!!! I think I KNOW your Dr Dismissive......or maybe it was his brother Dr Arrogant. I hope all the support your DH is finding he has, will help get an immediate result.

One morning I arrived at the hospital to visit my late husband, and he wearily asked me "What is the difference between Dr Arrogant and God". "Dunno, what is the difference between Dr Arrogant and God". His reply....."God doesnt think hes Dr Arrogant". Ah.......you have met him JandJ.

Oh JandJ! I cross posted with you and I am open mouthed at the treatment your DH and his family is receiving. I am glad that your DH has started to talk to the powers that be and although I was completely understanding of your reticence to complain last time I think you have no choice now. Regardless of whether a complaint helps anyone else, you deserve a different response for yourselves.

I'm pretty sure I recall one of us lovely ladies saying she had the skill to help you craft the appropriate letters. If she is still out there and willing I'd be snapping up her offer. I'd look up who it was but my employer has a nasty habit of expecting me to work when I'm at work.

Still enfolding you in love and comfort.

J and J, we (dh & I) are both disgusted and angry on your behalf. Don't worry about crying in front of the Dr, it's a wonder you didn't knee him in the groin (I would have been SORELY tempted). I can't believe that you've been let down so badly again in such a shoddy, uncaring way. You and your lovely family have been through Hell and this seems to be so cruel. By the way, don't apologise to us - we will stay and keep you company as long as you want us to.

When you feel ready, please write that letter to the Chief Executive, this is absolutely unacceptable. I know compensation would be of no comfort to you but maybe it would hit them where it hurts and you could put the money towards Uni fees or something?

Oh my lord! it's just awful J&J I don't know quite what to say to you :(
So sorry you've all been let down again, imo it's gone way way beyond not acceptable.

Agree with lazarusb, when you feel ready to do so, write that letter of complaint. It can't change what's happened to you and yours but it may stop others in any similar situation being treated as appallingly as your family have been.
I really am angry, disgusted and devastated on your behalf.
Big hugs to all of you tonight xxxx

I am sorry JandJ... I can't post at this time because I don't swear.

I'll be back later.

What about contacting one of the lovely tabloids out there. They would love a story like this one. Publicity even adverse publicity seems to work.
Really angry on your behalf J&J

The way your dh has been treated, albeit that he's failed to be treated for a condition that you were told well over a month ago required urgent surgical intervention, is beyond disgraceful.

It's yet another shocking indictment of the NHS which frequently appears to be incapable of joined up thinking and regards patients as if they are inconveniences.

Without knowing which Trust is responsible for this shocking state of affairs, it seems we can confidently assume that it is not fit for purpose.

To me, your experience is further confirmation that unless NHS patients fall within the category of the great, the good, the famous and infamous, or happen to be politicians, successful outcomes are more a matter of accident than design.

I very much doubt that the surgeon who so callously dismissed your concerns today is quite so dismissive of those who are on his private list, and I also very much doubt that there would have been any shortage of whatever blood type your dh requires had he been a private patient.

Your dh has been placed in the invidious situation of needing to make a formal complaint in order to get the treatment he needs, and the fact that this treatment has been represented as being of critical need renders his situation even more unenviable as, inevitably, you are going to wonder whether complaining before he receives treatment will have an adverse effect on the quality of the care he eventually receives.

Certain things are sent to try us, but this is a trial by ordeal too far and I hope that you will raise hell with the numpties who are responsible for causing so much havoc and distress to you and yours, JandJ.

As for you being sorry that your update has been all about you and yours, we may natter away when you're otherwise engaged and I'm more culpable than most for passing the drinks and edibles around and going off topic, as it were, but no-one loses sight of the fact that this is your thread, your place to offload and generally unburden yourself and you have nothing to apologise for using it as it was intended to be used.

The circle continues to widen and the prayers go on; somewhat amended to take account of this further unwelcome change in your circumstances but, nevertheless, they remain intended to comfort you throughout your time of need and beyond.

awful, awful. I am so sorry you've all been put through this. It really is appalling that you've been strung out like this. I hope you get some redress - I'm sure you will - but, as you say, that's not the point for you all at the moment.

I'm just so sorry you've all been put through this

So sorry you have been treated this way, your H deserves so much better :(

JandJ, you must be exhausted emotionally as well as physically. Izzy is right, this is your thread, here for you, and whilst we keep the home fires burning it is only so that they are a welcoming light when you need it.

The words of the Universal Declaration of Human Rights keep going through my mind. 'No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.' They were there at the last cancellation and they're screaming now.

Your DCs are being put through so much alongside you and your DH and the system is failing you all. I'm almost glad your DS2 is angry. Perhaps it will help him deal with what must be tumultuous emotions.

Time for the Trust (haha) bigwigs, MPs, Department of Health. Demand private treatment paid for by them, and well before 3rd September. Shout, stamp and cry if you need to and don't worry about who sees it.

And above all, remember that we are here, and we care, and we will listen.

That reads so much like a sermon (sorry to rant on your thread) that I think I need to announce that today's hymn words are 'Speak through the earthquake, wind and fire'.

I hope you managed to sleep a little last night. Can you e-mail your local MP, just express your total frustration and sheer hurt. This cannot be doing your blood pressure etc any good. Can we help in any way? We are all furious for you, but always here when you need us (despite the waffling!).

This is horrendous. I'd be tempted to go to the local paper and definitely your MP. So sorry for you and your family.

Okay, I can post now.... I am simply so sorry that I couldn't post last night JandJ.

Firstly, let me reiterate what Izzy said: THIS IS YOUR THREAD!

The fact that we banter and bump the thread is to keep it on the front page of MN so that you can find it when you need it/us. We are simply the JandJ support team - not the protagonists. Your DH and your family have to been an inspiration to each and every one of us on this thread. Of course we have shared our stories - but only so that you feel that you meet with friends who have experience to share. Nothing more and nothing less.

I don't audit NHS now - but have enough contacts to make a few phone calls to get up-to-date advice.

Can you google your NHS and PCT and check who the auditing body is? This is important for when you send your letter of complaint to the CEO. You should copy in the Clinical Director, your DH's current surgeons and the Auditing Body. Also copy in your local MP with an additional covering letter asking him to ask a question in The House of Andrew Lansley (Secretary of State for Health).

Now, Parliament is 'down' at the moment - but don't miss the trick of getting your MP engaged at this stage. The secretaries and PAs are all holding the fort and they will get your letter through to your MP.

Write a factual timeline account - dates when your DH was told this operation was 'urgent' and needed to be done sooner rather than later; who told you; who confirmed it etc. Note in the timelime any letters, discussions and phonecalls you have had subsequently - including the reasons given for cancellation. (Use this thread to help you with the dates and events.) Okay - that is the factual bit sorted!

Then your letters should refer to the timeline of events and it is the letter that should focus on the emotional devastation that DH, you and your family have endured. It is in the letter that you refer to his Bar Course which will now have to be deferred for a year.

Claim all costs - the Bar, the travelling to/from hospital for non-events, loss of work for you/children and include pecuniary costs of about £5,000 for emotional damage for the whole family. (I know you are not into the financial loss - but £5,000 would get you a good holiday when DH eventually has his operation and the family needs some re-grouping.)

Can you also remember what the original consultant said? "Without this operation your DH will........... " If you can show life-threatening (which I think you can) then you ask why the hospital is playing Russian Roulette with your DH.

Now there is a separate phone call that you need to make...... not a letter.... you say that you will arrive at x hospital tomorrow at x am to pick up a full record of his medical notes. You have to do it this way so that 'they' don't have time to go through the file and remove paperwork. If they haven't time to photocopy - you say that the original record belongs to DH and they can photocopy HIS records in your presence. The original belongs to your DH.

(I am looking at my copious notes and I really think I have reflected what I was asked to advise you. I do have a friend who was a former CEO of a hospital down South and she has said that I can phone her back with any questions you might have.)

Love to you as always JandJ x x

If you save the thread into 'I'm watching', any responses are clear to see and it saves the pressure of keeping the thread on the first page iyswim.

I've been so impressed with the love on this thread. Really restored my faith in humankind it has. How lovely people can be.

HOpe all's going well OP xx