Has anyone made a formal complaint to the NHS?

[cktwo]

We've just found out that DD1 has hearing loss due to nerve damage and suspect is was one of the drugs she was given in Special Care as a baby.
Now that in itself is not my complaint; my complaint is that its taken 4.5 years to diagnose this. From birth to 3 years old DD1 was seen by a consultant audiologist who kept asking us to come back in 4/5/6 months for further hearing tests. After upmteen hearing tests we got frustrated their indecision so self-referred to Manchester as we suspected DD1 had glue ear. This was confirmed by Manchester and it is them who finally found the hearing loss after the glue ear was resolved.

As glue ear is such a commom problem why did a consultant audiologist miss it and the subsequently uncovered hearing loss.

DD1 has speech and language problem and is more or less non-verbal. In the words of our new and competant audiologist "we have lost too much time".

So where do I go now? Do I ask for a copy of the hospital notes? If so how?

Oh dear, poor you and poor dd.

We did make a complaint, although ours was tied in with lack of SALT, and this was bfore his diagnosis of di-george syndrome.

DS2 was first noticed to have hearing problems at his 2yr check, he was already under the hospital for resp infections, failure to thrive etc. He was ref to ENT and had his first lot of grommits and his adenoids removed. No improvement and six months later (just after his third birthday) after several severe bouts of tonsilitus that left him hospitalised, he had his tonsils removed and an ABR hearing test done whilst under the GA>

When we went back two weeks later to ENT they told us that his hearing loss was purely down to glue ear and that his grommets, that had come out had been replaced and all should be well.

Six months later, still no improvement with speech or hearing we go back for routine check to see a different doctor who asked us how he was getting on with his hearing aids, and was reprimanding us for ds not wearing them. It transpired that we had been given incorrect info and that ds did in fact have a sensorinueral loss in both ears and would always need hearing aids. I can clearly remember how furious and distressed we were at wasted time so you have my sympathy.

We wrote to the cheif exec of PCT and copied it into the head of SALT services, the senior manager of hearing services and our local MP. We actually didn't get his notes but you could request them. If you are I would suggest doing this before you put in your complaint.

The complaint was resovled in terms that we got an apology and actually very good SALT services since and we had a meeting with the cheif exec of the PCT. That in itself made us feel better.

A year later we get his diagnosis and find out that he has a type of cleft palate and should never have had his adenoids removed, and because of this he has had to have major surgery on his palate and will do again in the near future. AAAAARRRGHHHHH!

It really depends on what you want to achieve from your complaint I guess, for us at the time an apology and the chance to rant was enough for us.

Good luck and sorry for my rant!

I guess I just want to stopo it happening to someone else really. And now we're going to have to move back to the original hospital for hearing aids and access to the hearing imparment team, I want to ensure nothing else goes wrong from here in.

I'm going to search the PCT website to see how we go about accessing DD1's notes and go from there. Poor DD1 starts school in September and needs to hear.

I'm sorry to hear your story SC, in many ways it is similar to DD1's - grommets, adenouds, resp infesctions etc etc

I hope you and DS are doing better now

A good place to start will be PALS (patient advice and liaison service) - the hospital switchboard should be able to put you through to the team at your hosp.

Good luck with it. I did think the stories were similar and I am cross on your behalf. Clearly its not a life threatening mistake that has been made but it is a life changing mistake, and we were both furious. Don't underestimate your need to vent.

Will she be having grommets or hearing aids? To totally fair I have found our hearing services fab, they have done lots of assesments on the school (ds2 is in reception) to make sure background noise is at a minimum and a hearing impaired teacher visits to make sure he is accesing everything.

When you say your dd is non verbal, does she attempt speech but it is unintelligable or is she silent?

It is a strange thing because the NHS has saved his life on more than one occassion which is the only reason we didn't pursue it further, but even now a couple of years on I still shake with anger when we have to go to ENT.

PALS is probably a good place to start for obtaining info on medical records.

i am currntly in middle of a complaint, in our trust the person you have to ask for is the information governance manager - it took me ages on phone to get to them as was transferred again and again!! they have up to 40 days to get them for you, to view is free but copies are 25p a sheet up to a maximum of £50 hope that helps xx

Will speak to PALS, many thanks for that.

DD1 does attempt words but they are very unclear and she loses words after a few weeks/months. By all accounts her hearing will be really good once her aids are fitted. It'll be interesting to see if her talking improves.

OMG! They charge for copies .
I'll go and do it myself

oh and if the person who youre requesting the notes for has been seen in the last 40 days i think it is then they dont add another £10 charge to find the notes, but if its older than that they do so might be worth timing when you ask if youre due an appointment? filling form in is crap as have to ask for a form then send it back and wait, but if you get someone good like i seem to have they will phone you when they are copied and you can go and pay and collect immediately!

Thank you JBM