paediatrician passing on info without consent

[kate45]

I wondered if anyone can help, (sorry this is a bit lengthy) my dd has agenesis corpus callosum, diagnosed pre natally, but she is now nearly five and is asymptomatic, and was discharged from post natal consultancy check ups at 18 months and we were told to expect no further problems.

She has recently started school and about 18 months ago I asked the GP for advice as she was experiencing a toilet training phobia, she advised we consult the community paediatrician which we did and all was resolved. About a month ago I was asked to attend to see the paediatrician again, and did not know why, I just assumed it was a routine pre school appointment. On arrival I was told it was a follow up to the previous years visit, I explained that we did not need any help now, and was asked some questions about dds development, and asked if I wanted the school nurse to be informed. I said I did not as there were no concerns, and was told to come back in eight months if I wanted, or if things were still Ok to ignore any further appointment letter.

I was horrified to then receive a letter detailing the entire discussion I had had, some of it quoted in speech marks in a really patronising manner, accompanied by a note telling me this same letter had been sent to the school nurse.

I feel as if I have been thumped in the gut by this complete betrayal of trust. I did not want to inform the school about dd's diagnosis as she is symptom free, and the condition is so rare people tend to misunderstand it and I did not want her to be labelled, I also work in a role where all my colleagues will be able to see this private information about dd once it goes onto school records.

Does anyone have any advice about what I can do, and have I got any legal rights in this situation, I think it is a contravention of NHS patients rights, my parental rights and the data protection act, but is this correct??? Please can anyone help?

i reckon it is contravening patient confidentiality as you are her parent/guardian.surely they should have asked your permission. I guess the school has a right to know if she has toilet training problems as some schools will not accept children who are not toilet trained. But i personally think that should have been your decision. I would have been really angry

Thanks for your reply - the toilet training issue was about night time only though, and has been resolved for over a year now, which is another reason I was so annoyed as the whole thing was so unneccessary.

Does anyone think I stand a chance of making a formal complaint about this?

The school staff won't know anything about your DDs medical condition, only the school nurse.

The school nurse is part of the Child Health Team, so part of a team that is made up of paediatricians, GP, HV, and any other medical professionals that are involved with your child.

Child Health Records aren't held by school (education) staff. They have no access to them as they are confidential. They aren't linked to school records in any way. They will only know aspects of your child's health that you choose to share with them.

(Exceptions to this is where a child has a Statement of SEN, and medical information is shared with the school where relevant to the statement).

i would.good luck Every hospital has a patient complaints office and procedure. And once you have made a complaint ,it has to be looked into within a certain length of time. ( cant remember what it is tho)Ring them up and they will send out the correct forms to you.

To Sidge - I work in a secondary school and all relevant teaching staff/support staff have access to IEPS and IPPS, and not just for statemented yps but all those either Statemented or School Action or School Action Plus. Health information on all these yps are accessible to all teachers and other school staff, so I am not confident that the teaching staff cant access this information in dds school. As my dd has an asymptomatic condition I just wanted it kept out of any school records, and stated this verbally to the paediatrician, so surely she has breached some rule or other by blatantly disragarding my wishes?

Thanks alypaly I will have a look at that,

In cases of child welfare and 'information sharing' the parents permission is necessary - unless there are serious concerns about the childs wellbeing, when confidentiality issues are overriden in the childs interest. Wellfare bodies can only do this if there are serious concerns eg, neglect, abuse etc.

Unless the people who have not obtained your consent can prove it is in the interests of the childs wellbeing, physical or mental, they are on a very sticky wicket. They may try to say that the school nurse needed this information to fully care for DD?? But unless the paed confirms that, for example DD may develop behaviourable problems, fits, etc then she had no right to break confidentiality.

They must do things differently in different counties; schools where we are can't access any health information unless it has been specifically copied in to schools records as relevant to a statement. An asymptomatic condition of no relevance to a child's education wouldn't be copied in. Health info should be included on a need to know basis so if the school are receiving and including ALL health info for students someone needs to be controlling access to that information, or limiting it's inclusion in school records.

So yes if you specifically asked a paed not to include certain info then they have breached your confidence by doing so, unless they thought the information was necessary for her school to know (but then they should have discussed that with you).

behavioural

Thanks to you all for your advice and support. We have decided that we will be complaining via the NHS and also we will be seeking a meeting with the school. Does anyone know whether dd may end up on the SEN reg as a result of this information being passed on, and are we supposed to be consulted if that's the case?

Sorry, I only know about the legal stuff re information sharing, child protection etc. will try to find a link so you have some ammunition, it was totally wrong.
www.unison.org.uk/file/A8157.pdf

I dont think you can go wrong with this

I would be cautious about having a meeting with the school until you are quite certain that the teaching staff have access to the information. They may not have, in which case it would be better not to raise it. IYSWIM.

in my county the school nurse will not divulge any information to the school unless it is likely to impact on from an educational aspect. It would not necessarily lead to SEN registration.

Also in our county all reports regarding children have to be copied to a child health folder so that every child has an accurate health record. This would not be available to education

I would stick to a complaint to the nhs trust, not involve the school at the moment, after all they presumably did not request information they were not aware of iyswim.

IME school nurses are shite and a complete waste of space and teachers/TAs have no idea what is going on with the health of the children in their care so to be perfectly honest complaining will just draw attention to whatever issue your DD may or may not have. So I wouldn't bother.

food for thought indeed, thanks! On second thoughts after reading all this, maybe we ask to see the nurse rather than the teacher, explaining that the information she has been sent was sent without our consent and that we intend to take action against the person who did this. Not sure what to ask of the nurse apart from a reassurance that the information will not be documented in school as she recieved it against our wishes?!

I have a feeling that information not legitimately obtained can be removed from files permanently. Not sure where I'v heard this but I'm tired, been up since 7. and must stop looking at handbags on ebay and go to bed! . Good luck Kate you have a good case. night.