To complain about nhs treatment (NOT AFTER MONEY!!)

[Shiraznowplease]

My dc 5 was diagnosed at birth with complete hearing loss in one ear. We have attended NHS APPOINTMENTS approximately six monthly since. We have now seen someone privately as we were worried it was impacting on his schoolwork. The private consultant was less than complimentary about the tests carried out by his colleagues and lack of action (no treatment), so he booked us in for testing by his staff. We went yesterday and found that actually he has moderate hearing loss in one ear (good news as were told no hearing) and mild loss in his 'normal' ear. He has booked an appointment to discuss treatment options. We are in a fortunate position that so far this has been through Bupa and that we can afford to pay for treatment/ops needed. However my DH in particular is fuming that all of this could have been dealt with years ago but for the incompetent care we have received on nhs. He is not after any money but feels we are owed an explanation/apology. I am feeling a degree of relief but also annoyance that someone who could not afford to pay would have a child who received substandard care and may be left to struggle at school. Is my DH being unreasonable to complain??

[Brittabot]

Watching with interest as my DS aged 4 has been diagnosed with sensorineural unilateral hearing loss in one ear. Do you know the type of hearing loss your child has as I know glue ear can fluctuate.

Under the NHS we have gone for audiology tests every 6 months or so, and undergone MRI/genetic testing etc to find cause (none found).

What treatment options are available to you? In what way is your child struggling that you feel you need treatment? We have always been told that as my DS has good hearing in his other ear there is no point in a hearing aid/cochlear implant, but I can see you would be concerned if you've found his other ear has hearing loss too.

[ILovePud]

Sorry your DS has been having problems with his hearing. I think it's reasonable to make a complaint and ask for some explanation as to the potential misdiagnosis and lack of treatment. It is very frustrating that all the treatment options that are available privately aren't available on the NHS but that doesn't mean that the care was incompetent. I think sometimes it's not as cut and dried as it seems in terms of diagnosis, conditions can vary over time and there can be advantages and disadvantages of different interventions, sometimes wait and see can be the best option though obviously I have no way of knowing whether this applies to your DS case. Unfortunately some clinicians do seem to be in the habit of slagging off other clinicians and other services, like a dodgy builder who says the last lot who worked on your house were a bunch of cowboys but they can put it right at a cost. I think it's reasonable to highlight to a patient if their care has been substandard or not adhered to accepted best practice but sometimes more about the clinician's style and their ego and they don't think about the effect on the patient. Hope you get this sorted and that your DS benefits form the treatment. I'd suggest having a look at what the NICE guidelines say about testing for and treatment of paediatric hearing loss.

[londonrach]

I had hearing loss as a child, years of testing, hearing aids etc then age 7-8 my hearing became perfect. No idea what happened. No surgery happened. Wonder if similar situation has happened to your ds. Can't believe hearing improves but in my case it did. I would certainly ask questions to the nhs trust re his previous tests. Good news. Only downside is I missed learning sounds when learning to read so tend to read words literally.

[Shiraznowplease]

Thanks for all your comments. His hearing loss is something to do with ear drum and nerve function. All the parts are there but he is unable to detect low sounds at all and struggles at high range. The doctors believed it to be genetic as DH cousin has the same but weren't sure why this was. He is currently in reception and has struggled with sound blending and phonics, so much so that I have paid to go on a course and we work on it at home. His teacher was excellent but he was getting frustrated at being unable to make the leap from letter sounds to words. The nhs advice was he can't hear, a hearing aid won't help and he just has to get on with it. The private consultant says that we have several options including implants. Thanks londonrach you have given me some hope :) I feel annoyed that my ds struggled in nursery when it was seemingly unnecessary and feel for other dc who may be in the situation my ds was in. I am not after any compensation or for any disciplinary action as I said I just want to know why and be reassured that other dc wouldn't be left where we were a matter of weeks ago.
Londonrach I was wondering if there was anything you found helpful with reading?

[Shiraznowplease]

Brittabot we only had audiology tests yesterday and we are on holiday from tomorrow so going to see consultant when we get back so will let you know what we are offered. We are aiming for half term for any ops/treatment

[Shiraznowplease]

Ilovepud, thanks for the message off to google NICE guidelines now :)

[MiscellaneousAssortment]

I'd get a second opinion otherwise it's just one consultants word against another - annoying to do but I would be wanting to complain about this. If the original consultant is routinely misdiagnosing or deciding not to share potential treatment avenues could be limiting children at a crucial time of their development.

If this is the case, this consultant needs to be brought up to date ASAP. If its more opinion based, then still procedures and information sharing need to be revised. Was it a long time since your child hearing had been tested? Or has he always been inaccurately measured? And why were no treatment options ever discussed?

I am a supporter if the NHS, but I also don't believe that anyone should accept substandard care or treatment from the NHS. That does a disservice to all who work there

[bebebringingup]

You need to complain if they are being negligent about treatment.

After all, there many be other children out there who don't have access to private healthcare that have also been missed.

[goinggetstough]

Check out the NDCS (national deaf children society) website too. They have a parents' forum called parent place and you will get lots of information. I have found them an excellent source of information.

[londonrach]

Will pm you op

[MrsBoldon]

If you've had two appointments a year for 5 years it would be surprising if every person you saw was wrong.

I'm not saying that's not what happened but why are you sure THIS Dr is right and they were wrong?. Is it maybe because you prefer his opinion? I mean that very gently and of course, any parent would prefer things to be better/easier for their child.

I think the assumption is that private HC is better. It is in terms of waiting lists, nicer hospitals etc but it rarely means 'better treatment'.

And I know lots of Consultants, private and NHS and lots of them think they're better than the others. It's a bit of a trait with some!.

[petalunicorn]

I have hearing loss, managed well as an adult (I don't use aids through choice but can't hear people if I can't see their face). As a child I learnt to read very quickly but learnt using what I guess would now be called look and say. I am a firm supporter of phonics but in this case would it be worth trying another method? You could discuss with the senco at school?

[Brittabot]

Thanks Shiraz, my DS is about to start reception so I'm aware that we could have some issues ahead.

Sorry to sidetrack slightly from your initial query but does your DS have an allocated teacher of the deaf? In our area we have them and we have had visits from ours since my DS was a baby, at home then at nursery, which has really helped, to date, in terms of addressing any problems. Has your ToD commented on the difference in findings? My DS's has been good in terms of advising us on different resources available too.