AIBU to make a formal complaint to the hospital(s)

[HorribleDay]

My FIL was diagnosed with cancer in late December. He died 1st April, 2 weeks ago. He lasted weeks and weeks longer than predicted, which was a blessing and a curse due to his suffering.

I have several complaints about his follow up care, but need to get some perspective as to whether I am being unreasonable due to mega emotions about his death. I have made an informal complaint and it's being looked into, but the head of Patient Services is advising I now make it formal. But it feels not significant enough to make formal????

Be gentle though, I am grieving.

COMPLAINT NUMBER 1: FIL was seen in outpatients in early Jan and refered to a sister hospital for, we were told, 'a view to whole brain radiotherapy'. Appt came through for a week later, FIL went with my DH 9who is a nurse of 30 years). At the appt at sister hospital, he was told he hadn't been refered for radiotherapy at all, but for a chance to take part in a clinical trial where he had a random 50% chance of radiotherapy and 50% chance of nothing. FiL and DH (and all of us) very upset as we had thought there may be something (radiotherapy) that could have either lengthened his life by a few weeks / months or made his quality of life bettter. He turned down the trial, was told he's go back to the original consultant for follow on care. We were all very disappointed that we'd been misled - we should have been told it WASN'T for definate radiotherpapy.

This was 23rd Jan. Letter back to referring hospital dated 23rd Jan. Early Feb we phoned consultant's secretary who said they'd not heard back from sister hospital. We chased sister hospital who told us they would fax the letter that day.

COMPLAINT NUMBER 2: We phoned the secretary at least 5 times between early Feb (around 9th-11th) and mid-March when FiL was in a hospice. Each time she said 'I'll speak to the consultant and call you back with an appt date'. She never called back. She is now claiming that they never recived letter until 23rd March, 8 weeks after he'd been seen at the other hospital. She should have said, sometime in that 8 weeks, that they'd not got the letter surely? Or chased it? or at the very least, not fobbed us off?

COMPLAIN NUNBER 3: Hospital saying letter arrived 23rd March. We recived a letter on 3rd April dated 28th March with a follow up appt for....16th May. This would have been after the consultant reviewed the letter back from the sister hospital. He STILL felt it appropriate for FiL to wait ANOTHER 7 weeks, on top of the 9 he'd already waiting for a follow up appt. 16 weeks for a follow up appt for a man acutely symptomatic and given weeks to live from metastatic lung and brain cancer.

I'm so angry and so sad.

Thanks for sticking with this mammoth post, sorry - didn't want to drip feed.

AIBU to make this a formal complaint? The hospital (without saying too much) has had some VERY negative publicity recently.

Good for you. I can see that they don't want consultants' email addresses public - they might get bombarded - but fgs why can't the hospital webpage have an 'email your consultant's secretary' link?

Also I would ask about why it took them 8 weeks to 'see' that letter!!!! Unreal. Good luck with it all x

Suspect they'll claim they never received it until March when it's stamped - which begs the questions why did sec not tell us they didn't have it? Why dis other hospital say they'd faxed it. Why did it take 8 weeks for a letter to get from one part of the city to another? Why, when consultant saw we'd already been waiting 8 or 9 weeks, did he think it was ok for us to wait another 7 weeks?

It feels (I know this is an over-emotional reaction) like they knew he was going to die so delayed and delayed so he didn't 'waste' a clinic appt to be told there was nothing to be done :(

Very sorry that you recently lost your FIL. Agree with the other posters, you sound to have good reason to make a formal complaint. Not to put a cat among the pigeons, but possibly FILs GP could have done more as well to chase for a follow-up appointment.

Oh OP. Please don't think that. I'm sure the consultant wouldn't have colluded in that. I think it is just heartless bureaucracy.

Thanks for that Northern - it is interesting, though the key thing there is, why is this info kept from the public - why can't you email a contact at the hospital? Or even leave a phone message? Don't you see that in the vast majority of cases, this means that patients can only contact the hospital on the hospital's terms? I think it is really bad and no other service - not a private company, not a university, not a government dept - operates this way, to my knowledge.

Anyhow will stop hijacking now!!!

Very sorry for your loss OP - and please do complain. I have family and friends working in NHS and they are constantly wishing MORE people would make legitimate complaints, threaten press involvement etc as it is the only thing that changes things. Good luck x

Know, it's my very emotional knee jerk reaction!

No cat among the pidgeons here re GP - he was very good post diagnosis, but dismissed Mil's lung cancer as asthma for A Year before referring for a chest x ray, and FiL's brain mets as labyrinthitis for 10 weeks...he only had brain scan when dizziness got so bad he fell down the stairs and got rushed to a&e - only then did someone think to perform a simple neuro exam and look in his eyes refraining massively high intercranial pressure - I'm not a huge fan of GP, but DH thinks they were easy to miss diagnoses ...

No worry re hijack either - good to have a productive suggestion to make.

Given the national (and international) bad press this hospital has received recently I think they'd be very keen to avoid any more. Don't - definitely don't - want to go down that route, but hopefully won't have to.

Yes you should definitely complain op. It will hopefully go some way to improving cancer services for others in the future. It will also help you to know you have done what you can, and it will also help to bring you some sort of closure. So sorry for your loss.

Revolting - you can leave phone messages - most departments will have answerphones. One department I know of got a message left on Christmas Day! I think the e-mail thing is because in a lot of areas we just haven't caught up with modern ways. Some of our communication with patients is done by text now - but again that's not universal and we certainlly could make better use of it. Why does my hairdresser send me a text reminder but my GP doesn't for example?

Yes, please complain.

The core of your complaints are system failures which if highlighted and improved, could make a difference to someone else.

And the blatant lying about the trial etc. - - oooh you want to push that one as far as it can go. That is disgusting. A head needs to roll for that one - I think unethical would be a good word to start using.

Good luck, and I'm so sorry for the loss of both your PIL. Take care x

I am so sorry for your loss HorribleDay.

You should absolutely make it a formal complaint.
They need to know exactly how they affected your FIL couple of months.
And the only way they will change is if they are pulled up on their terrible standards.

Thank you all. Did consider the Ethics Board as a possible contact point but once there they explained very clearly - it was the referring doctor who was totally misleading. He's not on the trial team for them ( one part of my job is health research).

Just leaves me feeling rubbish - the whole thing. Bad enough losing both PiL but this is all insult to injury really.

Right will get writing :)

Any attempt to enter a patient into a trial without written, informed consent is a very serious matter indeed. If proven, there is the strong possibility of a prison sentence. Clinical trials legislation is very strict indeed, and if trial staff breach the regulations they risk the trial being closed at their centre, and a huge investigation by the MHRA. This can lead to all research in a particular hospital being suspended.

In fact, only the Principal Investigator or their nominated deputy can obtain consent, so a doctor not on the trial team should not even be involved. The whole thing sounds dreadful.

Depending on the hospital then phone calls can be recorded in Electronic Medical Records. Usually this has outgoing i.e. hospital to patient but obviously can be used to record enquiries.

The problems you've faced with the lack of communication are just dire. Please continue to press for answers and improvements.
Some clinicians I know do have patient contact by email (it has to be documented in the notes as consented). As I work 'behind the scenes' there's far less patient contact.

Very sorry to hear of your losses.

Long complaint written - 3 pages in fact. So so sad this afternoon writing it all down. Thanks for all the tips on here - have managed to make my questions very clear!

I think, since your DH was at the appt as well, they cannot possibly try and pass it off as "the clinical trial was explained to your FIL", which is probably what they're going to try and do, thinking they can get away with saying they did it and he forgot or was confused. Your DH being there makes all the difference to that scenario.

I think that you should formalise the complaint, definitely. It's not so much about your own experience now, although hopefully getting a positive outcome will make you feel a little better, but it is as you've said that addressing the issue now may prevent another family going through the same bollocks.

Consultants and departments need to be brought up short on this sort of thing - it's just not good enough. :(

Good luck and I hope that it isn't too stressful - and very sorry for your loss.

Whoops - failed to read the second page! Glad you've done it and sorry for being a dunce!

Glad you got it done OP. Good for you for putting yourself through it - it may help someone else. x

Hope so! Dont even really want an apology - just for it to not happen to anyone else...!

Let us know the outcome OP x

Thanks everyone for all the advice and support.

Letter recived today - the Trust has offered a "full and unresevered" apology and has accepted full responsibility for all the areas of our complaint.

They have, in response:

• Retrained the secretary on what she needs to do with concerns from relatives, including where letters have not been received from other hospitals.
• Explored their 'rating system' for letters from GP's / Consultants etc and regraded the system so that no patient with terminal or potentially fatal illnesses will be graded as 'soon' for appointments instead of 'urgent'
• Raised the issue of communication between hospitals at exec board level to try and put a system in place where if a patient is referred to another hospital, they will chase the follow up letter from that hospital.

Doesn't make our losses any easier, but I am pleased that things are being done and just hope no one else has to go through what we did.

I would also FULLY encourage anyone to complain if necessary - I was worried I was 'making a fuss' etc, but it has (hopefully) led to really changes happening.