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.

Firstly can I say I'm so sorry that your DFIL lost his fight , cancer is an awful thing to suffer .

Yanbu to make a formal complaint ...it does sound that errors were made concerning appointments , and FIL was lacking care from those you all trusted .

You should make this a formal complaint, waiting 16 weeks for someone who has been given weeks to live is appalling and the mix up over the treatment was shocking as well. You FIL should not have been treated like this. Although they can't go back in time and change what happened, making a complaint may mean that this does not happen to others.

You can always seek further advice first - from PALS or even from a solicitor or maybe one of the cancer charities could help. Not to sue but just to know how best to go about the complaint if you feel it would help.

Yanbu

So sorry for your loss.

Am also sorry for your loss.

Definitely make a formal complaint - presumably that means written as opposed to verbal. Nothing will happen unless you do.

Hospital admin often lets the NHS down, and if this isn't challeneged, it will never improve.

I am so sorry for your loss, and for what your poor FIL and family went through.

Yes, you should complain, otherwise nothing will change, HCPs will not learn from their mistakes, other families will go through the same thing.

However, it will be a long hard road, and very tiring and distressing.

I know, from bitter experience. But we have to do it, for the sake of those that come after us, IYSWIM.

sorry for your loss of your fil.
Cancer is a nasty ,painful ,evil ,disease.
I know this all to well
YANBU- shocking absolutely shocking and disgraceful treatment and admin failiures here.
Please complain

I am so sorry for your loss

You absolutely must make a formal complaint. The first reason alone is enough - how inappropriate and cruel to mislead a terminally ill man in that way

YANBU - Please make a complaint. You never know, they may find a fault in the system that could stop it happening to someone else. I think the clinical trial bit is shocking tbh.. I'd be seething with that.

Sorry for your loss. :(

I work in the NHS and have seen formal complaints. You absolutely have enough there for a formal complaint and should make it as such. I would bet every penny I have that this is not the first such case the head of PE has seen and that's why she wants you to make it formal - because weight of numbers counts and will make a difference to service provision. Your fil has received sub-standard care. It may not have impacted on the length of his life. Sadly I know from my own families experience how limited survival can be with that type of cancer BUT your experience of care has been awful. You've been in this situation because the people concerned have not kept on top of the situation and have not put the patient first. They need to work on this. I would guess btw that the referring consultant did expect your fil to be offered the radiotherapy but the receiving consultant did not consider that appropriate but would offer the trial. That should have been properly explained both to you and to the referring consultant so he/she can make more appropriate referrals in the future. Did you get any input from a palliative care team or was that who referred for radiotherapy?

However, it is important to understand that the national cancer strategy is that ALL cancer patients should be offered the chance to enter a trial.

Generally, the control arm of the trial is the current best available treatment, and the second and possible third arms are newer treatments/drugs that may or may not prove to be better. This should have been explained, and it sounds as if it was very badly handled. Nobody is obliged to enter a trial.

Sometimes, entering a trial is the only way for some patients to get the newer, expensive drugs that are not funded by the NHS.

OP complain - that is awful just to an outsider reading it on a screen, and I cannot begin to imagine how you must feel, let alone your DH whose dad I'm guessing he was.

They have led to needless distress at the most difficult time of your lives, perhaps. I actually think their treatment is unethical. Plus whilst I think northern is right that it may not have saved him to have seen the consultant, I guess part of you will never quite know and that must feel awful.

Sympathies

Input from palliative care never appearedfrom the hospital - we accessed it ourselves as MiL died of lung cancer in July :( GP referred to local hospice in March and FiL died there 4 weeks after being admitted.

Head of Patient Experience told me today that letter to radiotherapy hospital from consultant says FiL had trial explained to him and consented to referral.... He didn't. My DH would absolutely have known - he was there for whole appt, and words 'clinical trial' weren't mentioned once, nor was an indicator given.

The hospital they referred him to is only doing the trial for brain meta currently - there is no radiotherapy for brain mets other than via the trial :(

YANBU

And Euphemia - so sorry, and hope the road is as smooth as it can be.

Thank you all - I was worried that I'm venting and angry because it's easier to be angry than to be hurting with the bereavements. Glad to know I'm not.

Head of PE is very nice - but is starting to say things like 'well if we didn't get the letter until the 23rd March...' and 'well the letter from hospital A to Hospital B says your FiL had the trial explained...' which worries me - that they'll dismiss our concerns. Tho at the same time she's telling me to make it formal (in writing).

I bloody hate complaining (except about trivial rubbish on MN!) - hate complaining in RL.

Oh Lord - that's dreadful then. Complain, complain, complain - this is NOT good enough.

Interesting 3littlefrongs - MiL (who saw same bloody consultant as was referred to hospital C for her chemotherapy - apparently the area has 3 cancer hospitals, one for general, one for radiotherapy, one for chemo) never got offered any trials at all. She was told her best chance was chemo so she went for it. She fought so so hard too, and would have taken every chance.

The date the letter is received isn't key tbh. You were calling, the patient had no follow up appt - what did the sec do with your messages? Did she/he pass them on but they were ignored? One message can get lost. If more than one message has no results it's because either the system in place is beyond lousy and/or the consultant is ignoring them/giving impossible instructions and the sec doesn't have the relationship with the consultant or the rest of the hospital to sort things out. When the patients I work with ring I call them back or arrange for somebody do so or I live a message with another HCP. There are loads of reasonable ways of dealing with distressed relatives needing follow up. Your experience is NOT one of them.

I just do not want any other family to go through this hell.

Radiotherapy, or an earlier appt, wouldn't have lengthened his life I don't think - maybe by a few weeks? But for another family, waiting 16 weeks could be absolutely critical.

We'll never know though if his last weeks would / could have been more comfortable - until he went into hospice his GP was costing every few weeks juggling steroids an pain relief without consultant input because we were waiting waiting waiting :(

Really good point northern - it shouldn't have mattered WHEN the letter arrived (tho I believe it was faxed in early-mid feb) - it's dated 23rd Jan but stamped as 'seen' on 23rd March.

You know, sorry if this is a hijack, and hope it isn't insensitive but...

It does seem to me that a real, basic problem here is that you can only contact consultants via their secretaries, and you can only speak to their secs in person (not leave voicemails). At least, this has been the experience with every consultant I've ever seen.

The result is that you spend hours and hours ringing up - and also, there is no written record of all the times you chased them. If you could email you could point to a paper trail. Even if you could leave voicemails there would be some kind of record.

Maybe, do you think it would be worth suggesting this as a practical step they can take to make patient contact easier/ more transparent?

Also horrible that is itself dire, the letter was written in Jan but not processed till frigging' MARCH? That itself is just awful, apart from everything! In a hospital, where waiting might matter! I am actually really angry on your behalf now.

Yes yes yes - absolutely. When FiL was first diagnosed, due to Christmas, we DID speak to the consultant on the phone - re prognosis, as he couldn't see us before he went away for 3 weeks. There is NOTHING to prove we've called secretary - even my phone records will just show I called the hospital.

I'll suggest that as a practical way forward for 1 of the issues - as don't want the letter to just be a 'rant'. I don't even really want an apology (not sure it'll change anything) - I want something(s) to be different.

Revolting - that depends on the consultants. All of the consultants I work with have given their e-mail addresses to some patients and the patients use that direct for advice as well as ringing and speaking to other team members. If necessary we can paste the e-mail trail in to our electronic record. However this has only come about with some patients in a relatively small chronic disease population, the seriously ill members of which are seen very frequently. Our consultants will, in some cases, be caring for patients for either the rest of their working lives or the rest of the patient's life. There is a long term relationship here which many consultants do not have with their patients. That's nobody's fault, just the nature of the specialities. E-mails too can be overlooked. I agree though that in some circumstances e-mail is a valuable and under-used tool. Itwould have been particularly helpful for the OP if they had a specialist nurse contact they could have e-mailed or could then have advocated with the consultant on their behalf.