Wife Of - Feel let down by the system

Morning

Thank all so much for taking the time to post your comments, I really appreciate it. 

Hus as is finally opening up talking about it to me and some of his football friends, which I am Pleased about, he finds the word “anal’ a bit embarrassing, I have mentioned that if he finds it easier then say bowel, but to be honest it is something that should be talked about 

he had the telephone pre-op (day late Than booked)

I took him for his pre-op usual tests last night and they could not find the appointment details, luckily he had the text and a kind nurse at 5pm did the tests needed 

my local doctors surgery have no letters or paperwork other than the discharged for polyp removal in June 21 . Is this strange ? 

I did ask the lady who booked the operation to investigate how or wide under general if we could have a copy of the letter that should of been send in June 2021 regarding the AIN3 result - still waiting 

28th is looming and it has suddenly become very real, I just pray he is one of the ones who has Ain3 treatable and the delay in treatment has not had an impact x

Hi Summer69. , it’s sounds as though there’s been a serious breakdown in communication regarding your husbands care going way back!! This really is unacceptable. You need to have confidence in your Dr’s especially when you’re dealing with something as serious as a possible cancer diagnosis! Please make the hospital aware that you want copies of any correspondence with your husband’s GP etc., although it sounds as though there’s been none of that either to date! Ask again for a copy of the letter regarding the AIN3 diagnosis & keep asking until you get it, you need this. Your GP’s surgery should be provided with copies of letters referring to everything your husband has had done at the hospital, mine certainly get these & I was asked in the very beginning did I want copying in on these letters to which I agreed & I have them all in a file for my reference. 

The people I am aware of that have been diagnosed with AIN3 have been periodically monitored because of the risk of it advancing, it’s sounds as though this hasn’t been the case for your husband & that’s disgraceful in my humble opinion. There’s been shortfalls in his care all over the place & I know you’ve got a lot on your plate at the moment but I would definitely be contacting PALS & putting in a complaint at the very least about the lack of communication. If I’ve read your posts correctly they’re 2 years late in delivering the news that your husband has AIN3, I’m absolutely flabbergasted at this & I would be wanting answers. 

Please know we’re here to support you both whenever you need us & just to let you know we also have the Family and friends forum should you feel you need to speak with others that are also supporting a loved one. 

Nicola 

Summer69

Nicola has said it all .  Even if your husband is clear, and we all hope very much that he is, everything begs the question, how many other people has this happened too?  Quite honestly, I would get PALS involved right now and let them do the chasing of all the various departments, it is the last thing you should be worried about right now.  Your husband may have to agree that you will liaise with PALS on his behalf, but you have all the facts at your fingertips.  It will not affect any of the treatment that your husband is having and may well alert all those involved in his case to the shocking shortfalls in his treatment.

I am keeping everything crossed that everything goes well on 28th.

Irene xx  

Morning 

finally, after a call to doctors PA husband finally seen!

Only mistakes this time were; pre-op telephone appointment 1 day late and pre-op at the hospital no records of it booked in, thankfully he had the text. 

28th September he had a anal biopsy test full 360 scrape & deep incisions. 4-6 week wait for the results.

i really wanted to be with hubby for the surgeon visit to hear what he had to say and to ask questions but surgery carried out in the conveyer belt at beevers day centre at  at St James hospital, so not allowed 

So he was told he took 2 anal growths out (1 on each side), I was cancer,  other benign, he said he thinks he got it all, we hope he is right and all the worry has been for nothing. During the quick chat hubby mentioned he said cancer not Ain3 and discussed treatment options, he had to go and get notes as forgot he said this! Doctor said it was a fluke he cut the anal growths out as was only removing colon polyps, and they did not look cancerous. 

My question is, the doctor is a surgeon and reviews are good, but guessing if  cancer has not travelled since June 2021 he is a very lucky, but why has everything been done verbal and alone, not any letters etc 

thank you so much for all the previous replies 

Hello Summer69

I am so pleased it is over, I am sure you both must be so relieved that the biopsy under GA is over.  Four - six weeks is a long wait so given the hospital's history with your husband I would start ringing around the fourth week to chase them up for the results and please don't let them fob you off!  It would be such a good result if your husband required no further treatment, let's hope this is what happens.

In your shoes I would still consider going to PALS so you have a written record of everything that has happened.  It sounds as if the admin is seriously lacking at the hospital if even now, two years down the line, the appointments were all mixed up.

I do really hope everything goes smoothly now on for you both.

Irene xx

Hi Irene 

thank you, I will be the nagging wife at 4weeks without a doubt. I have a countdown on my phone. 

 I have read so much on this forum and it has helped greatly 

I am going to contact PALS as soon as we have the results regardless of what the results are.  even if it is to highlight the flaws, to ensure lessons are leant and future patients are not treated the same way. 

thank you again 

Sx

Oooooooo, I'm glad it finally happened, but still, no record of the biopsy appointment, no permitting someone else in the room to get the details, and still no letter or anything written to back up what your husband remembers of the conversation?

I was very foggy when I came out of my EAU and biopsy. That was in the height of Covid, and my husband was still allowed and EXPECTED to be with me when the surgeon spoke with me afterwards.

Absolutely follow up in 4 weeks, but get something in writing NOW that outlines what they've done (and thus shows what they HAVEN"T done) NOW. 

A paper trail is essential in following this up.

Suz

Will do suz, I rang the PALS line but it was very busy, so I am going to send an email 

a bit of clarity would be great and right 

thank you x

Not sure everyone is aware, We are entitled to be copied in to all correspondence in your health care. So any Dr's letters to our Gps we can have copies of. If you don't get them ask at your Gp's for a copy or even you full record. 

There is no cost but you will need to fill out a form and allow the usial 28 days for this to be prepared. 

Hi Hopie

1 year - so pleased for you. You must of had a clued up doctor to diagnose without symptoms or signs. 

Hubby was told first at 1st meeting there was no lumps in 2021 and no obvious lumps on internal in August 23, yet, like you say it can be invisible.then at biopsy surgery he said he remove 2 small anal growths that did not look cancerous, 1 was. 

At least the latest biopsy, he did sounds like he has gone to town, as  in no area can escape. 

I have emailed PALS tonight after advice on here. I explained what has happened and requested written information and facts 

Sx