To make a PALS complaint?

When my DH has his private MRI scans (the NHS don't have the one he needs!!), they do a full detailed report, along with the full suite of images, all emailed to DH/his consultant/his GP, and all posted to us too on a CD! Very impressive and efficient - all done within a couple of days of the scan, and the report includes both technical (for the consultant) and lay-man's (for DH) language so the patient can understand most of what the scan shows.

Yup, changing consultant, like moving hospital, is one of theirs ways of fiddling the waiting lists.

But won't you have to get someone to read it, then action what's needed? Is this included, or will you have to pay again?

@Badbadbunny absolutely! Poor DM is also having cancer treatment, for some reason her cortisol needs to be measured at sparrow fart o’clock which was missed at her first blood test, so she was summoned to return to clinic v early the next morning where she would be “first in the phlebotomy queue”. When she arrived - earlier than told - there were already scores of people waiting for bloods. She politely explained that she would miss the boat - again - if she had to wait till they were all done. Officious witch barked at her to wait her turn, so she did. Another phone call the next day - why wasn’t it done earlier? We explained. So back again the next day where I got extremely grumpy with the poor receptionist and she eventually relented. So DM - and her crappy veins needed for chemo - had 3 blood tests and about 9 contacts from the clinic - just for bloody phlebotomy. This must happen day in, day out - so why aren’t they set up for it?

I suspect the costs of repeating things due to staff errors dwarfs that of missed appointments. It’s another day, another cock-up with mum’s treatment.

I hopped your DH is making good progress 😊

Write to your MP

I was waiting to see a rheumatologist for six months, just a week out from the appointment it was cancelled because they wanted me to see a different consultant and I had to wait 6 more months. Three times they cancelled that appointment and then made it for when I was on holiday so I rang and was told “well now you’ve cancelled it, it will be another year before you can be seen.” I was furious so wrote to my MP. I couldn’t see the point of contacting PALs.

My MP contacted me to sign forms so he could use my details when he contacted the hospital and miraculously I got an appointment within 4 days. The consultant wasn’t particularly friendly, I admit, but I got my appointment and my treatment so I’m not bothered, tbh.

Certainly complain. If nobody says anything then nothing changes.

I suspect that the relevant consultant is either off long term sick or has left, and no manager has organised locum cover.

Yup! It's amazing how they can magic up appointments etc when they have to.

We were sat in the reception/waiting area to see DH's oncologist once when a pleasant old guy was trying to make a sequence of appointments for his next course of chemo and the receptionist was being an awkward sod - the guy had brought his list of dates for the blood test, consultant appointment and then the several dates of the course of treatment, but the receptionist was having none of it and telling this guy he couldn't have the blood test date he wanted, and she was rudely talking over him as he kept trying to explain that it HAD to be that date to fit in with the consultant appointment x days later and then course of treatment start y days later, otherwise the later dates wouldn't go ahead because he knew that the blood test result wouldn't be processed in time (from prior experience). It's exactly the same problem my DH has suffered for years with his cancer treatment. Receptionist kept saying "no appointments available". Anyway he got called through to the consultant, and we were still waiting when he came out, with the consultant in tow, and the consultant TOLD the receptionist to make the appointments as per the patient's list! Funnily enough she suddenly found that there were appointments available on the dates he asked for after all! Some of them are either incompetent or on some kind of power trip. Of course, she gave the old guy the usual "death stare" once the consultant had gone back to his office.

It’s so frustrating. My local women’s hospital - constantly threatened with closure and yet - paradoxically - also constantly overwhelmed with patients - has informed me twice I’ve been “lost to follow up” when I’ve chased my annual appointments. Of course they never are annual, because apparently even a piss-up in a brewery is beyond their capability. I’m on about my fourth PALS complaint for this sane thing, because I refuse to waste hours of my time waiting for a sentient being to answer the phone. I’m sure PALS groan when they see my name, but miraculously, I’m always offered whatever I was promised by a clinician very quickly.

It’s great that PALS can put rockets up their arses, but FFS, this stuff is not hard, if you have half-decent people and systems. JFDI.

You've done the right thing. Don't expect anything to happen quickly - our experience is that PALS are ridiculously busy and it takes time to get messages through to the relevant departments. But it's good to have drawn a line in the sand as a point of reference, especially for if things get worse, as there's now a record on their files and it will be included in their beloved statistics.

The NHS is in the state it's in because people have been conditioned to accepting crap "because it's free" and that messaging is just unacceptable and thankfully, the tide is turning.

Get a grip! It’s not like the only standard we expect from our health service is “well it didn’t kill me”. Multiple cancellations for something that could be important is not good enough.

MRI rationing is ridiculous and it’s bloody obvious to a 5 year old that there aren’t enough scanners. Those that we do have should be working 24/7 as they would in the private sector to avoid situations like OP’s.

I knackered my back and was left on a spinal board in a corridor for hours, worrying about cauda equina. The A&E consultant I eventually saw told me that “the gold standard” for my symptoms would be a MRI scan. I said “is that what I’ll be having then?” and he looked really surprised that I’d asked. The upshot was, he refused the MRI until he found out that DH is a NHS consultant in another hospital in the Trust, at which point I was rushed to the vacant scanner within (literally) 10 minutes. The entire shitshow is rotten to the core and needs consigning to the dustbin of history.

So yes, do complain.

Cancer care isn't universally good. DH has had cancer for 9 years now and at times his treatment has been shambolic. He's made a couple of complaints via PALS which took a long time to be acted upon but did make a difference in the long term. Even with cancer patients, they're more than capable of cocking things up, i.e. forgetting to make promised referrals to other specialists, forgetting to make referrals for x-rays, MRI/CT scans etc. Getting the sequence of monthly appointments wrong, despite the sequence/timing being the same very 4 weeks for the last 9 years - still sometimes get the blood test appointment after the treatment start date which makes no sense at all! Even them not organising his chemo drugs to be ready to collect on the day the monthly treatment cycle should start. The organisation/administration is utterly shambolic.

It's the way they manipulate the statistics to make it look as if waiting lists are getting shorter.

They did it under Blair's Labour too. My FIL waited over a year for an "urgent" cancer operation that should have been done within (I think, 16 week target in those days), but it was just one sodding fiasco after another, being moved between hospitals to "restart the clock", being moved to a different consultant to "restart the clock", etc. It was so obvious that it was around the 14-15 week point in one hospital/under one consultant that he was suddenly and inexplicably moved to a different ward/hospital, without even giving us notice!

Happened to me too, after going to A&E a couple of times, literally nothing happening for 3 hours and then a sudden rush to have x-rays, blood tests, ECG, etc., with almost indecent haste and then surprise "discharge" back to GP at literally 3 hours 55 minutes with no answers/treatments. They had screens in the nurses/doctors stations colour coded with patient numbers going red when the time was running out.

It's no way to run a health service when the doctors and nurses are obsessing about timescales and fiddling the time statistics instead of actually treating the patients.

In terms of useful outcomes you could ask for

• a trigger in the system that when a consultant appointment is cancelled for the third time, they look at it and put on an emergency clinic or similar

• better training in communications about all this, eg for the doctors who wouldn't give you an orthopedic referral

Complain. Otherwise it goes unnoticed. And harm is being done even if you're not dead.

Consultant probably left but they haven't replaced them yet...they wait ages to reappoint to save money...and there may not be anyone applying but they keep adding to the list...I'm not sure how it all works but having worked for 37 years in the NHS many departments ' organisational skills are shameful.

Yes that’s exactly how it is. I’m three weeks post ACL reconstruction and if I waited for NHS, I would be still waiting for MRI let alone a surgery