Waiting and more waiting - what's your NHS experience?

Hi everyone, I don’t want this to come across as a rant or to put down to the NHS, as clearly many have had life saving procedures. It’s just that it feels like all I am doing is waiting and more waiting and each time I have an appointment a new spanner is added to the works with no clear resolution. Is is me or are unruptured aneurysms not treated as seriously or urgently in the UK in comparison to the other countries represented in BAF support community?

So what I want to know is about your NHS journeys
How long from discovery to treatment? Does anyone have an idea on what the NHS/NICE guidelines are? How does one get a second opinion on the NHS?

I thank you all in advance for reading/responding TC

Hi Jho

You do not mention how long you have been waiting, please advise.

If it has been an abnormal amount of time, then I suggest the following.

a. Write a letter to the Chairman of the Hospital Trust advising him/her of your unsatisfactory situation and asking them to intervene and sort out your issue!

Secondly,

b. Write a letter to your local MP advising them of the unsatisfactory situation and ask your local MP to intervene with the Hospital Trust on your behalf, send a copy of your letter to the Hospital Trust with this letter to your MP.

In your letter to the Chairman of the Hospital Trust, suggest that if the your/that Trust has a long waiting list, for brain treatments, then they should refer you to another Trust that does not have such long waiting times.

With regards to your question about a second opinion, you do not say what treatment has been offered to you and by whom?

Was it a Neuro Surgeon or an Endovascular Surgeon? If it was a Neuro Surgeon I would be asking him to refer you to a Endovascular Surgeon, so that you can better understand your options with regards to possible treatments!

Please supply more info on your condition and what treatment has been offered and by whom?

In the interim get the letters off to the Chairman of your trust and your Local MP.

Kind Regards

Martinc

Hi Martin, thank you for your constructive response. I am being seen at Charing Cross Hospital London, after being referred by my local hospital West Middlesex University Hospital. The MRI that discovered the 7mm ICA (at ophthalmic branch) aneurysm was done in April, I’ve had a CT with contrast but I am still waiting for a CT Angiogram. At the last appointment I was told my only option is a flow diversion stent due to the shape of the aneurysm but I have to wait for the Angiogram before we progress to confirm the treatment plan/surgery. The next appointment to see the neurosurgeon (but he also specialises in endovascular procedures) is not until January next year.
I wonder then if it’s a normal amount of time to wait? I have not been able to find any guidelines about treatment times scales so therefore I don’t feel I am in a position to make a complaint to any official persons.
I am also unsure as to what treatment options should be available to me on the NHS. In terms of hospitals I was never given a choice as to where I could get treated (I do know in London you should be able to choose the trust you are to be referred to).
In terms of risk of spontaneous rupture I’ve not actually been told except it started off as 0.5% p.a. generally for the size but has increased due to shape. I have since had access to family history with one maternal aunt having survived a SAH 10 years ago.

Hi Jho, Thanks for your reply and info!

Please find below a link to a website that deals with the risks associated unruptured aneurysms, most specialists refer to this study when evaluating risks, even here in the UK, use the links below each sub section to expand the report. http://www.nejm.org/doi/full/10.1056/NEJM199812103392401

There are 2 types of Angiogram, 1 is via the groin and the second is a MRI Angiogram done with contrast being injected via the arm, I had this one done last week at a follow up, it is painless and hassle free.

I would still write a letter to the Chairman of the Trust asking him if it is possible to bring you treatment date forward, you will get his name on the Trust website!

With regards to the treatments offered? all treatments carried out worldwide are available on the NHS including open surgery (clipping) (wrapping) and then endovascular treatment via the groin (coiling and stents) I have had 2 of the latter last year in Oxford.

It sounds like they are proposing open surgery for you, but I would be asking the Neuro, if it is possible to have it coiled? Indeed ask him what are all your options for treating this aneurism.

I hope this info helps you some what.

Regards

Martin

Thanks Martin. as mentioned in my second message I’ve been told my only option is a stent (due to shape).
how long did you wait from finding your aneurysm to treatment? I guess what I’m trying to ascertain is the length of time from discovery to treatment. I am considering talking to my GP to refer me to a different hospital for a second opinion.

Hi Jho. I had an appointment with a Neuro and a Endovascular surgeon within 1 month.

By all means ask your GP for a second opinion from another Trust, though it may take some time for an appointment, you could of coarse go for a private appointment with a Neuro which could be quicker, were your GP could forward your Scans to the private Neuro.

If it is a long wait for a second referral, then this is a good option, it would also give you peace of mind.

Regards

martin

Hi Jho. My 6mm annie was discovered incidentally via CT in Nov 2012. I have no complaints about the treatment I was offered then. I was seen at Kings College Hosp and was given the talk about risk percentages and was left to make up my mind whether to treat or not. At the time of my appointment in the spring of 2013 I decided not to treat (which could have been coil or clip) but to have a follow up scan 6 months later. This was duly done and no growth or change was noted. To my dismay I have not been offered any further follow up scans. This was fine for a few months but has now started to play on my mind. All I am seeking is a scan every year or two but I am having trouble making any sort of definitive contact with the relevant department. Having told me that I have this thing in my head it seems like now i am expected to forget all that and continue life with no neurological follow up and I am finding it hard to reconcile this.

Hi Chris, I can see why you (or anyone in a similar situation) would feel concerned at being left without follow up. Sadly I have known someone in that situation who is trying to get see again and had to pay for a private appointment to get things moving again.
I wish you all the best in getting scans/peace of mind.




Chris said:

Hi Jho. My 6mm annie was discovered incidentally via CT in Nov 2012. I have no complaints about the treatment I was offered then. I was seen at Kings College Hosp and was given the talk about risk percentages and was left to make up my mind whether to treat or not. At the time of my appointment in the spring of 2013 I decided not to treat (which could have been coil or clip) but to have a follow up scan 6 months later. This was duly done and no growth or change was noted. To my dismay I have not been offered any further follow up scans. This was fine for a few months but has now started to play on my mind. All I am seeking is a scan every year or two but I am having trouble making any sort of definitive contact with the relevant department. Having told me that I have this thing in my head it seems like now i am expected to forget all that and continue life with no neurological follow up and I am finding it hard to reconcile this.

Martin, I am definitely thinking of paying for a second opinion as waiting for a referral may slow everything down even more.




MartinC said:

Hi Jho. I had an appointment with a Neuro and a Endovascular surgeon within 1 month.

By all means ask your GP for a second opinion from another Trust, though it may take some time for an appointment, you could of coarse go for a private appointment with a Neuro which could be quicker, were your GP could forward your Scans to the private Neuro.

If it is a long wait for a second referral, then this is a good option, it would also give you peace of mind.

Regards

martin

Hi Jho

Just reading your post and hope you have had better luck with getting a date for your surgery now. I was under charing cross too but they kept cancelling my op for various reasons from no beds to the aircon in theatres was broken so my gp has managed to get me under Addenbrookes in Cambridge who want to operate as soon as possible & have already offered me dates. I have already had a SAH rupture on a 25mm aneurysm on my brain stem which was coiled & have 3 further Annie’s, one which is a large & dangerous MCA. Remember you have the choice where you want to be treated but after waiting over 2 years for urgent surgery I lost faith in that hospital. Good luck with your treatment there & I hope you have much better luck than I did.

Hi jho just wondered how your surgery went, I’m due to have the same procedure on the nhs in around 5 weeks time.

Hi Rich, unfortunately I am still waiting. It’ll be a year since discovery in April. I do need a stent but I’ve been given high stroke and mortality rates. Since my first scan the aneurysm had grown.
All the best, Jho x




Rich7469 said:

Hi jho just wondered how your surgery went, I’m due to have the same procedure on the nhs in around 5 weeks time.

Hi Rich, Are you going for coiling and stents or open surgery, I can comment on Coiling and stents but not open surgery.

kind Regards

Martin

My 6mm aneurysm was also discovered accidently,when they found I had an acoustic neuroma in March 2014. I have recently had a cerebral angiogram which has confirmed this diagnosis.The future seems to be of "watch and wait", what for I can only imagine, this may be because of my age, 72 .If this thing goes,I dont think I stand a chance, because of the distance to hospital

Hi Feline

As with all these little buggers, it is all about location size and indeed the risk of intervening by means of surgery, open or coiling, as both need a general anaesthetic and accordingly they carry risks, the risks are higher the older one is.

Depending on the location and size, all surgeons will take your age into consideration when deciding to intervene, in some cases non intervention and annual monitoring by means of a scan is best advised.

In my case I am 61 and have 5, 2 have been coiled and stented and 3 require open surgery, which I am not up for, so I am scanned and have an angiogram every 12 months to see how things look, so far so good, but I am taking a big risk, as is anyone with these vile things .

I would have a good chat with your specialist and ask him to be open with you and explain why he has chosen the conservative approach, but I guess he will agree with what I am telling you above.

If you need more info on risks and general information let me know and I will send you some more info.

Best Regards

MartinC

Hi Jho.

I have replied to you in the past and I suggest the same route to follow.

Get in contact with the PALS at your hospital and get them on your case, secondly contact your local MP and get them working on your case as well.

I remember the last time that I gave you this advice you did not want to rock the boat, now is the time to rock the boat, also get your GP to get you a second referral, make sure that each mail that you send is copied to each of these people, ie: your GP, the PALS and the local MP, give them your history and how you have been pushed from pillar to post.

Trust me you will get results, now is the time for action and only you can instigate the process.

Contact me if you need more info.

Kind Regards

Martinc

Thanks MartinC for your reply, I have had no information other than what I have gleaned from the internet. I was a terminal care nurse, so tend to look at the worse case scenario. I just need to know how to conduct my life to reduce risks