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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

to be pissed off with the NHS?

70 replies

loflo · 03/08/2010 17:21

So DS was really poorly in May and in our local hospital. And they did nothing. For six days. As I watched my little boy literally fall to pieces. I was the one who phoned and arranged required tests at a larger hospital seventy miles away due to a crap consultant being too busy (looking at holiday villas online - honestly).

Tests done and DS was rushed back to said larger hospital and thankfully was treated really well.

After a lot of thought and getting legal advice we made a formal complaint about our local hospitial. And we were told we would have a response within 20 working days. And guess what? No response. So I called and was told they needed longer. So I have bit my tongue for another 20 days. Today is 40 days since the initial complaint and have now been told its likely to take at least another week because of folk being on holiday (in their nice villas )

So AIBU to want to throw my toys out and go to the press or should I just bite my tongue and wait for the response?

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hugglymugly · 03/08/2010 19:57

I also don't understand how it was that the larger hospital arranged an EEG when (presumably) the only contact they had was from you. I've worked for the NHS and that just seems very strange to me. In all the areas I've worked in, nothing happens without a signature from a doctor/radiologist/nurse practitioner, etc., never on a patient's say-so.

Did you have a pre-existing relationship with the larger hospital? Had your son already been under the care of the neurologist there?

MadameCastafiore · 03/08/2010 20:00

If he needed a HDU bed that badly he would have been found one at another hospital.

purplewednesday · 03/08/2010 20:01

Hmmm. Were all the seizures documented by the nurses? Were they aware of them all?

Writing to request an eeg if a pt is being discharged may well be a reasonable policy of referral for a test undertaken at a larger hosp if is deemed non urgent.

Sounds like there was a problem with your DS clinical
assessment and documentation.

However, without knowing what else was happening on the ward at the time your DS was in it is hard to comment. Staff sometimes have to make very difficult decisions re priorities - altho a fitting child will come pretty high up. were there any other emergencies going on?

Presumably DS is OK now?

Try phoning the senior nurse for the dept and asking her advice.

I still wouldn't go to the press. (btw its not in leicester is it...?)

GirlofCadiz · 03/08/2010 20:07

Madamecastafiore did you ever see the militant medical nurse blog?

Original poster
loflo · 03/08/2010 20:13

Huggly once the ward DS was on knew I had phoned the larger hospital they phoned too to confirm that what I was saying was correct. That was after I phoned my GP for advice and he told me who to contact in the larger hospital.

And there was no other hospital. The HDU was full as it is a childrens hospital but DS ended up in a permanently staffed small ward (one other patient)where the nurse was not allowed to leave him without another member of staff taking her place. He was supervised 24 hours a day and they took notes on every seizure, every toilet visit, everything he ate (but hopefully not how many times I fell asleep with my head on his bed!) He was wired up for BP, heart rate etc

When DS was in our local hospital they gave us a "fit sheet" and asked us to record what we saw. They checked his temperature every four hours and that was all. His behaviour was all over the place (no wonder...) and they told him on more than one occasion to be a good boy. And suggested to us that it may well just be behavioural and they couldn't do much to help that!!!!!

DS is ok now tho after six days in the childrens hospital. On anti-epilepsy meds and getting on well with a bit of tweaking.

I will never forget the feeling of helplessness and feeling like DS was being let down by yet another lot of professionals. And I would hate anyone else to go through it.

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Original poster
loflo · 03/08/2010 20:14

PS Purple - not Leicester!

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Northernlurker · 03/08/2010 20:21

Clearly you were right to push for more help but I really struggle to understand how you managed to get an EEG scheduled simply on your say so.

Original poster
loflo · 03/08/2010 20:28

Don't think was just my say so northern - I phoned my GP who told me who to phone in large hospital which I did and they then phoned the ward that DS was in and the staff there confirmed that he needed an eeg.

That was the day after I refused to let the consultant discharge DS. And his named nurse there told me that the larger hospital were far more precious with their bed spaces, and they would always do their best for their local children

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Heebiejeebie · 03/08/2010 20:31

YABU. The NHS includes the hospital with specialist paediatric neurology services who treated your son. So, please don't blame the whole organisation. I'm sorry you have had such a difficult time, though. Are you in touch with PALS about the investigation into your complaint?

Conflict of interest: I should admit to being an NHS consultant who has been known to go to a villa on holiday. And even to look at villas online in my office.

Northernlurker · 03/08/2010 20:36

Right well that's a completely different scenario than the one you outlined in your op. Clearly there are deficiencies in communication and differences in clinical judgement. You need to know why the original consultant made the calls he did - because it isn't because he's lazy or villa obsessed. You may think that but I don't think thats the case. You need to prepare yourself for the fact that you might not like the answers you get.

OrmRenewed · 03/08/2010 20:37

What? All of it?

Original poster
loflo · 03/08/2010 20:40

pmsl at heebie - course you are allowed to look at villas in your office . Its the fact that the lovely fella obviously thought I was over reacting and never even read DSs notes. And if he had he would have known about his history which included a brain scan at four months after he was suffocated by a pillow by his birth parents. And showed damage to his frontal lobe. Tossers.

And thats exactly why money chasing is a definite no no. The same trust who mucked up so badly employs the neurologist who made DS well again and is a genuine, lovely, highly regarded man. Who I will be eternally grateful for (even if he likes a bit of villa browsing in his lunch hour)

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Northernlurker · 03/08/2010 20:43

Can you stop with the stealth reveal thing and just give all the information up front? The villa thing is a total red herring. Failure to act on history on the notes is much more concerning. Are you sure it was fully recorded in the notes available to this consultant and did you put this in your letter?

Original poster
loflo · 03/08/2010 20:45

Northern I know some of the answers I am getting as before the complaint was passed up the chain someone from the feedback team told me what the consultant had said in his report. That with hindsight he should have taken a different course of action. And has apologised for any upset he caused.

But apparently the letter we are getting is five pages long at the moment so guess it must say more than that.......

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Original poster
loflo · 03/08/2010 20:48

What information do you think I should give Northern? Inside leg measurement?

And no the villa thing is not a red herring. Its the gods honest truth.

And yes DSs notes go back to birth. And all the information was there. In black and white. And yes it was in the letter.

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abr1de · 03/08/2010 20:48

I now know never to have anything important done in hospital in the beginning of July. When we were on our Neilson holiday in Greece a week or so back, the resort was heaving with GPs, surgeons and consultants and their kids. It was reassuring to know that if anyone slipped round the pool area and injured themselves they would be able to to take their pick of the bunch. ;)

Original poster
loflo · 03/08/2010 20:51

Ah that could be the reason for the hold up abr1de! Hope Greece was great.

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babybarrister · 03/08/2010 20:54

This reply has been deleted

Message withdrawn at poster's request.

Longtalljosie · 03/08/2010 20:56

What NL means is the villa thing really isn't relevant. Having a quick look at villaparade between appointments doesn't say anything about how he handled your case. People do have a quick look at other stuff online when they're at work. It doesn't make them incompetent.

Original poster
loflo · 03/08/2010 20:58

Thats the thing babybarrister - there are very clear sign guidelines about what should have happened. And didn't. Regardless of DSs history.

Hope your DS made a speedy recovery.

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Original poster
loflo · 03/08/2010 21:02

No you are right longtalljosie. What made him incompetent was not following guidelines. And not reading notes. And not taking advice from other professionals who had more neurological knowledge than he did. And in the meantime DS spent 6 days in bits. That is definite incompetence.

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purplewednesday · 03/08/2010 21:07

Its interesting that you have commented on your feelings of helplessness - I think this is the crux of your post.
Watching someone you care about have a fit is extremely scary - feelings of being helpless and unable to fix it are entirely normal, especially if you don't have a diagnosis.

Putting a pt on a fit chart and 4hrly temp is appropriate initial nursing care. If his temp was elevated then he would have had paracetamol and more frequent temp recordings. If his fits didn't cease after a few mins he would have had medication. If there are relatives present, asking them to record the time, duration etc of fits can be extremely useful as it means that no small self limiting fits are missed, and if relatives are feeling helpless then this is a way in which they can provide a really helpful contribution to their care.

hugglymugly · 03/08/2010 21:08

Huggly once the ward DS was on knew I had phoned the larger hospital they phoned too to confirm that what I was saying was correct. That was after I phoned my GP for advice and he told me who to contact in the larger hospital.

It's beginning to make a bit more sense to me. The consultant I worked for the longest was known for being contactable by GPs, even for patients who hadn't yet been formally referred to him. I can well imagine that consultant arranging whatever needed to be done while bypassing the usual formal systems (and sometimes getting into trouble for that). And I can also imagine people below the level of some other consultants doing whatever they thought necessary for the care of patients.

What has been the response from the PALS team in the original hospital? They are the people who are there to listen to patients' complaints and should be on your side in this situation.

Longtalljosie · 03/08/2010 21:12

Although to be fair if a consultant was later incompetent then catching him websurfing would piss me right off too

Original poster
loflo · 03/08/2010 21:14

Sorry purple but I would disagree. We didn't contribute to care. We did it all. And they refused to medicate DS at all until an EEG had confirmed a dx of epilpesy. So we were stuck between a rock and a hard place. Despite the fact he was having an obvious seizure every half hour on the dot. For six days....... And they were happy initially to discharge him and send him back to school, and for us to wait for an eeg as an outpatient.

But we pushed to stay in and get a quicker eeg done which even the technician admitted was awful. His poor wee head was all over the place. Apparently the majority of parents who witness a first seizure think their child is dying. Imagine that every half hour for six days and nights........

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