To be furious with the school nurse

[Hedgehog80]

Iam absolutely fuming

Dd2 has various medical conditions, has 1:1 care at school and all going well. Good relationship between us, school and hospital.

The community school nurse paid a visit to school and 'reviewed' all children with medical needs. Fair enough I suppose, didn't think much more of it.
I then got a call from dds hospital as they had been contacted by school nurse with 'concerns'. We cleared it all up and I spoke with the school SENCO who was lovely. Said the nurse had told her 'I don't know much about these conditions but I want copies of this child's records to show my supervisor' the school refused. She them apparently wanted to see dd but they also refused that.

I thought that was the end of it-them I get a GP letter calling us in to discuss these same 'concerns' so I called the GP and explained and then o called the school nurse and told her very bluntly it has nothing to do with her. Dd2 does not have shared care and between us as parents, school and hospital things are fine.

Today I get more correspondence-this nurse is trying to arrange a meeting to discuss her concerns?? It has been addressed twice now and her concerns were the result of a misunderstanding which has been cleared up.
Turns out she is also taking advice from dds old hospital (we left as they made her very ill and gave us wrong advice and treatment) so Iam not happy at all.

She also will not accept that she is not to be involved with dd??? I do not want her interference.

I have written in formally to school banning her from any involvement do why is she persisting ? Iam really angry
Do school nurses have any power at all? I'm thinking of taking this further

You would think she would look stupid wouldnt you mrsSims sadly when it comes to children with health issues that is often not the case.

Hang around on any SN forum and after a while you will notice the huge amount of people with kids with SN's having problems with children's services from staff who point blank refuse to believe a formal correctly done DX, say you can't refer to your child as having a disability because apparently that's an abusive label, staff who consider an autistic teenager as being emotionally abused and neglected because they prefer not to 'socialise' in the same way or with the same frequency as children who have no social or comunication issues to staff who think children shouldn't use SN buggies as a tool to assist with sensory overload or that if you need one to prevent a child being a danger to themselves then that means you are failing as a parent and not capable of being in control even going so far as ones who shout fabricated illness syndrome the second they hear of any none visible condition.

Social care is a fucking nightmare if you have the misfortune of having someone who has little knowledge of your childs condition and it can be even worse if they don't realise how limited their knowledge is.

I don't think OP would have to do anything so formal as write to commissioners to exempt her child, School Nurses are not compulsory and don't have that kind of power. A request to the head of the nurse's team to butt out (put more politely) should be all that's needed. They're not usually people with time to burn, their caseloads are usually massive and are most often the first line of support for school and parents with the kids with low level non specialist health needs or emerging health needs like continence, weight, height, special diets, and helping referrals as needed.

It depends on the area rumble - but I agree writing to the School Health Team in the first instance should suffice.

I agree that caseloads are massive, so find it extraordinary that this SN hasn't gone "phew, this child is under a specialist team so I'll leave them to it"!

Where I work even patients who are fasting keep on with insulin, and a glucose drip.

Fasting patients are put on sliding scale here usually. Maintenance dextrose 5% and insulin

You know folks... This could be a simple case of - She doesn't accept NO as an answer. And now that the answer is NO she has dug her feet in.

I know plenty of Bullies that won't accept NO

But I really do think she is on a mission from that 'other'[bad] hospital

Ceic-I wonder if the nurse's "concerns" come with a hidden agenda to get your DD back under the old team because that's how the borough/whoever expects it to be done

((((((((((Hugs)))))))))) Hedgehog80

I think it's been very easy for the old hospital to maintain bad care for children with diabetes in schools in our borough
We had to fight for 1:1 care, ten fight again to have life saving medication in school and for staff to be trained (glucagon) as the old team tell all pre schools/schools they do t have to do it and that paramedics carry it anyway (ignoring the fact it needs to be done ASAP). So many other issues too and changing hospitals was the best thing we ever did. I think they are worried that now that 1 child has a certain level of care that others will want the same (rightly so)

More ((((((((((Hugs)))))))) Hedgehog80

Is it worth getting the media involved ?

I think they are worried that now that 1 child has a certain level of care that others will want the same (rightly so)

I'm thinking media because these idiots are going to get some poor child Killed.

" I think they are worried that now that 1 child has a certain level of care that others will want the same (rightly so)"

Rightly so. the parents should be able to access the best care available and with that old Hospital It isn't happening

Hedgehog80 - firstly well done for getting a one-to-one and glucagon training. We've been holding out for our pump (promised September, start this Monday) before we tackle those issues as it is a flat no in our area too.

I think the main problem is total lack of clarity about role boundaries. I googled it out of curiosity and I have to say even Diabetes Uk is very muddy on the issue: www.diabetes.org.uk/Guide-to-diabetes/Schools/School-staff/Responsibilities-school-nurses/.

Have you had anything through that describes the role? Could the school request something from the Trust the nurse sits under to provide to you? It might illuminate why she thinks this is her business when it is not.

Added to that she is not following appropriate processes regarding your child's personal information. Would the school be able to write to express their concerns? (It is them who she asked iyswim).

Then, could your consultant write a letter outlining how confident they are that they have the right plan in place and that they are not requiring any support from the community school nurse? Also requesting that any correspondence is copied to you and the clinic. That would be her boxed ticked.

For what it's worth she sounds like an ignorant nutter and I am terribly sorry that you have to deal with the stress of this on top of the T1 and other conditions.

The difference between the two hospitals is vast and really highlights the issues children with diabetes face in school

Hosp 1: misdiagnosis initially, awful treatment in hospital (DSN was off that week so no help really, wrong treatment suggested for hypo), refusal to let us do carb counting and instead poor dd at just 3 years old on fixed doses that were too high:( and then near constant hypos. Little or no support over phone or email (very slow to respond), wrong dose told for glucagon injection (for severe hypos). Pre school told no need to have it there, that they didn't have to. Very bad advice all round and told categorically dd would neve get 1:1 at school. Oh and a referral to SS three months after dx for parenting issues (this was because dd was late to pre school quite often due to frequent hypos and the fact I also had a new baby and two older children with health problems). Then we were told at least a years wait for an insulin pump

Hospital 2: amazing, pump virtually immediately, care plan done and school invited in for training. Support brilliant and respond immediately. We couldn't be happier. It's what all children with diabetes deserve and yet this nurse is questioning and even when I explained the issue about finger pricks I get the distinct impression there is another agenda

It's quite possible she does have some sort of agenda - trying to make a job for herself, misunderstanding T1, or whatever. Horrible that she has picked your dd to get a bee in her bonnet about. But remember you have done everything right and school and clinic are on board. She is overstepping the mark and not following correct processes so focus on that.

In an ideal world school, clinic and the school nurse could sort it out between themselves because it's not really about your dd, it's about what the role of the community school nurse is.

The difference between hospitals can be huge wrt T1. I'm on my 4th I think now, in over 30 years of diagnosis. First: horrific. Consultant refused to speak to me! I was there age 9-15, wouldn't speak to me even at 15, only to a "responsible adult, not a silly child like you". Current hospital is amazing, it has lots of adults on pumps, and every single child who is (or whose parents are) willing is put on a pump asap.

I don't know much about school nursing or anything like that, does the nurse have a professional obligation to see Hedgehogs child, like would the child be automatically on her caseload? Because if so couldn't she get into trouble for not making herself aware of the child's conditions and not having any input with Hedghog's daughter?

I'd have thought it was her responsibility to know about all the children? Couldn't she get into trouble if she's basically not engaging with one child?

Genuine questions btw

Maryz.

Only people who have a legitimate reason to see a childs notes should see them a child is entitled to medical confidentiality even if it means people who think they should see notes get refused.

When a genuine legitimate reason to see medical notes exist there is a correct process to follow that process never has and hopefully never will involve dishonesty or hoping one or more people will breach the law when the parent has refused access.

When people give in to profesionals who behave in this way they gradually erode the protection the law gives them, when professionals do this is erodes the protection the law gives everybody including themselves, it is why we have the rules we do.

The nurse DID see the notes (care plan and daily diary) and that was fine.

The issue is she wanted copies and then wanted to see dd and school rightly refused. The. The nurse decided to contact the hospital and GP with concerns which were actually due to a misunderstanding which was explained yet she still persists in wanting input/meetings etc

There is no reason why she needs to be involved when everything is in place and we have the hospital team, GP and school all working well together when needed and dd has excellent care. All training has been done and there doesn't actually need to be a meeting!

And fwiw, I have 5 children with complex medical needs and 1 child who had a very serious accident at age 9.

All children had their own care plan overseen by a consultant and only once was I asked to provide medical notes for one of the children by a school nurse, the actual request was made by an EWO who was sat next to the SN and was made so the school nurse could review the care my child was receiving so her attendance could be improved.

I refused consent after very politely asking what the SN thought she could bring to the table given my child actually had a full team of people inc 4 consultants who worked together and I'm certain all of them would agree that given the child concerned was in a coma that ICU was a far better place for her to be than school.

I did follow up some time later with her area manager who did confirm that they had no good reason to request the notes.

She was genuinely concerned-she though dd was having a HUGE amount of fingerpricks and that her fingers would be damaged. Once we explained that the big values were not in fact all reading from fingerpricks that should have been the end of the issue but the SENCO informed me the nurse had wanted copies and had said she was seeking further advice.....which I can only assume is from dds old team. I also do not understand why she didn't ask us or the 1:1 to clarify all the info in the diary
They have been banned completely from any involvement with dd and have been for the last two years so if the nurse has like I suspect been in contact with them I will be very unhappy as don't want their involvement directly or indirectly

Perhaps there's an element of embarrassment too-she went completely overboard contacting GP and hospital with her serious concerns which turned out to be a very obvious mistake on her part . I wonder if she is now being difficult in order to try and maintain there needs to be input from her and is trying to somehow justify her overreacting by trying to be involved?

Either way she should follow the rules.

If she does have concerns for the child the only real way to address them is by following the rules.

As far as I am aware those rules would give her scope to request consent to talk to the team who are managing the childs plan without interfering with it, going to a different team is outside of that scope

Have you thought of serving a section ten data protection order to the old hospital to stop then discussing your child? Easy to do and very effective x