If you have a chronic illness, how normal is it to be making complaints to the hospital?

[daisiessandbuttercups]

I have Crohn’s, but this question is for anyone with any medical condition that involves regular clinic appointments, tests, scans, medication issues, getting in touch if you have a problem etc.

I’ve had Crohn’s for many years and I’ve had so many problems with the clinic in the past few years, I feel like I’m writing to PALS at least once a year at the moment. Nearly every time I have a flare there’s a problem of some kind, fighting to be heard, nurses who don’t understand the problem, miscommunication leading to prescription errors, all sorts of other things. The stress they put you through is so unfair.

Is this normal? Is this just what we have to do to take care of our health? I’ve been in tears for the past few days because the process is so difficult.

I’ve made one complaint in 12 years.

Why do they have to put us through so much stress? It really is so unfair, just more and more stress every time.

I’m fed up of it all.

Mines not a very bad illness but I’m seen twice a year for follow ups and bloods. At least one of those appointments they’ll somehow forget Im there, not click a button or something and I end up waiting for up to 3 hrs to be seen. I’ve had apologies every time and then they go ahead and do it again.

DH is still waiting for his referral 8 months in and the doctors just look at him with pity but don’t do anything. Like they’d just accept it if they were about to lose their job and hadn’t left their house for months except to see the GP.

WitcherGeralt - which hospital are you at? Think I should move there!!

I’d like to know this too.

I'm situated south of the Watford Gap if that helps.

Are you in London? We want to know where we can get this amazing IBD care?

Do complaints to PALS actually do any good, I'm genuinely asking in case I have to make one on behalf of my husband.

Sometimes they do. On one occasion a hospital A£
&E failed to notice I was having a heart attack, in spite of me having a cardiac history, and sent me home to holiday accommodation on my own. A few days later it was properly treated with a stent at another hospital. I wrote to PALS outlining every details of what happened and the outcome was that they took it very seriously indeed: altered their cardiac A&E protocols, and instituted new training for junior doctors joining their department using my case as an example of bad practice. So sometimes it pays to complain - I hope someone's life has been saved by this.

As to care for chronic conditions - I have been banging my head against a brick wall with cardiology for years as I have a number of problems: leaking valves, atrial fibrillation, av node ablation, peacemaker etc. etc. If a problem arises I go to GP who says "not my pay grade" or more accurately "your problems are too complex and they go over my head." All very reassuring! Go to cardiology says he - OK but the wait is months and months. So I finish up in A&E. All very frustrating. And not a little scary at times.

I know people sometimes ask if we’ve ever considered going private. As far as I can see, private healthcare only really seems suitable for one-off operations, or issues that can be dealt with in a few appointments which come to an end once a problem is solved.

I don’t see how it’s suitable for chronic illness care. I don’t think private medical insurance companies even cover this sort of ongoing chronic illness care anyway. You would probably need to be a millionaire to have years and years of Crohn’s appointments and tests etc at private clinics.

It’s also really important to stay with the NHS because if you end up in A&E at a different hospital from usual, they can request your records immediately and make sure they have the correct information asap.

Crohns isn't covered by private healthcare because it is a chronic illness. And to be fair, given the cost of the biologic drugs, almost nobody could afford to go private anyway. My drugs cost nearly £1k a month.

My son has crohns. He was diagnosed when he was 8 and is now an adult.
When he was around 11/12 yrs old he went through a massive flare up. The doctors were saying it was everythiing apart from his crohns that were causing this. They even questioned whether he had an eating disorder!! Not once did they believe that his crohns was flaring. It took me 8 months for them to finally do something. This was after he had lost 2 1/2 stone at this point, was eating less than 500 calories a day, was going to the toilet over 30 times a day.

I put in a massive complaint to PALS about his treatment.. Finally I had a sit down meeting with the consultants who starting to actually listen.

He was eventually given another colonoscopy and pill cam where it was found that his crohns was now in his small bowel as well as his large bowel. It was no wonder he had been so ill and in so much pain.

I was appalled that they could treat anyone like this, especially someone who already had a diagnosed illness.

OP, I'm really sorrynthat you are going through this. I would keep putting in complaints. It's so unfair that you have to keep going through this.

Exactly. That’s why it’s essential to stay with the NHS.

Having made several complaints to PALS over the last few years, can I ask if anyone here has actually made a higher level complaint directly to the hospital trust, and if so how did it go?

@Londonnight Yes this isn’t an unusual situation, unfortunately. I’ve had at least a couple of flares in the past that they insisted it wasn’t a flare even though it clearly was. It just prolongs the waiting time for proper treatment.

I can’t take much more of this.

I made a complaint about the oncall neurologist at our A&E, it didn't go well. I ended up paying privately. Cardiology I've thought about it as they've fucked me around so much, so much so that I did a SAR for all notes and records from my appointments which completely contradicted the letter I received just that week, it made me proper laugh and my Gp was utterly gobsmacked that they would be so stupid.

DH had UC, completely fucked over by our county hospital that by the time he got a stoma, thankfully in another health board the professor doing the surgery was so horrified by the state of his bowels (very nearly like Swiss cheese he said, had no doubt it would be fatal had he not had his surgery immediately) that he himself complained. Thankfully dh no longer has a bowel or rectum so need to see those idiots again.

@BoarBrush That really is awful!

By the way, was it easy enough to do the Subject Access Request to get copies of your medical records, or did you have any problems there?

Yes, I have. I’ve followed the formal complaints procedure on the hospitals website which involved the cheif executive. Made absolutely no difference whatsoever. Basically got a reply saying lessons learned.. no lessons were.

DH made his complaint to the CEO and Director of Nursing. DD has a life threatening condition, and they forgot to give her her drugs in the evening drugs round. It could have killed her!

I had left much older DS to watch over her, while I went home for a shower, because I used to stay with her 24/7. Luckily, she told me when I got back - she has very poor memory, so it was very unusual that she remembered.

The Director of Nursing rang DH the same day. It never happened again.

This is what’s giving me a dilemma. I’m sure there’s lots of chief execs out there (not just in hospitals) who aren’t connected with what their staff do every day. But PALS = Patient Advice and Liaison Service, they aren’t exclusively a complaints department but they get in contact with other departments on your behalf, and it’s possible that in some respects, they might have more of an idea what’s going on in certain departments. Please correct me if I’m wrong.