# Diabetes in School



## ceara (Apr 28, 2009)

Hello all

As some will know I am a recent T2 member.  I am horrified by some of the stories that I have heard about children with T1 diabetes in schools (I am a SENDIST member).  Would folk like to share some stories so I can see what the fuller picture is?

Many of the stories I have read are illegal here in Northern Ireland.  Schools need to be reminded of their obligations and parents need to be more forceful in demanding their rights.

We may not change the world - but if we make it better for a few them it would be worth it.

Ceara


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## Northerner (Apr 28, 2009)

Hi ceara, I'm sure your help will be greatly appreciated! I'm moving this to the 'Parents' forum, as I think it may be more appropriate there.


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## bev (Apr 28, 2009)

Hello Caera,
I am so pleased you have found the time to read the links! How very kind of you.
There truly are some awful stories out there - but unfortunately they are still happening - you would think these stories were 40 years old wouldnt you?

I am so pleased you feel you have the time to help - it is not my campaign - i only know about it through the other forum. Another mum called Adrienne introduced me to it as she has a 9 year old daughter who is a type 1 diabetic - from birth - so she is the lady who can tell you more than i can - i have been accross to the other forum to tell her of your reply and i am sure she will be along shortly to 'put you in the picture' so to speak. You obviously have a very good background and have worn many 'hats' - which i am sure could be utilised if you were prepared to help in any way.
Thankyou again for your reply - these forums really are brilliant. Many thanks. Bev

p.s. the following story is about one of the mums on the childrens forum.

http://www.guardian.co.uk/education/2009/feb/17/diabetes-children    .


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## ceara (Apr 28, 2009)

Bev

It is better if educationalists work with parents rather than having to resort to Tribunals.

 In the first instant OFSTED will expect schools to consult with parents/guardians annually in relation to the School Development Plan - that is an opportunity to influence.  I have also found that if parents wish to speak to staff during a training day that is great.  I once got an eight year old child (T1) to speak to a group of teachers - she was brill!!!! - and the teachers were very impressed (little did I think I would get diabetes).

Ceara


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## Becca (Apr 28, 2009)

Hi we had a nightmare with schools, unfortunately we were told by the Human Rights Commission; Ofsted; and the beginnings of SENDIST that as we had removed my daughter and transferred her to another school they would not take up her case.  There is no consistency at all. It's appalling.  We were pushy parents and we still didn't anyway.

http://www.telegraph.co.uk/health/c...es-how-schools-are-failing-some-children.html

My daughter, Rose was diagnosed with type 1 diabetes at the age of 3.  Within two years at the age of 5 she suffered discrimination because of her disability at the hands of a school that was unwilling to care for her.  We eventually, after four months of poor care and attitude from them transferred her to another school that was willing to undertake her medical needs.  Her new school, is 2 miles from the old school, under the same PCT and LA but with miles apart in attitude and care.   

At the age of 5 Rose was expected to attend to her own medical needs even though we and her DSN (Diabetic Specialist Nurse) advised that she was too young for this.  After being at the old school for 6 months previously with care provided they then decided she needed one to one support (which we did not want and stated) and which they could not provide at the time.  The option they gave us was for one of us, her parents, sits with her in class, providing medical assistance when necessary.  Due to having a two year old son and work commitments we could not do this.  The care they had offered previously, which was not one to one support, was withdrawn and she did not attend school for five weeks before we decided as a family that this was not acceptable.

However, there are good schools and this is proved by Rose’s current school.  When Rose started at her new school, eight volunteers (including the Head) were trained in BMs, six in insulin injections (including the Head) and seven in the use of the insulin pump.  They treat hypos, hypers, with confidence, manage PE and swimming lessons.  The school has made it clear that every child needs to be in education and if this is what it takes for Rose, then so be it. They see her as Rose, who just happens to need a little bit more attention. They say that it “doesn’t take much” to look after her and it’s not a problem. The Head has told us that all the children should be aware of diabetes (in the old school they did not want anyone to know about it), so they understand why Rose has tests and insulin and is sometimes taken out of the classroom.  The heads support has always been consistent and she has shown great compassion, availability and understanding.  The TA, on the last day of term, thanked me for trusting her to look after Rose.  I was stunned; she doesn’t understand the thanks and appreciation I have for her and the others. 

I came up against numerous organisations within Essex that are meant to be there for the child:   the school; the PCT; the LA, SENCAN; parent partnership etc. and they all failed my then 5 year old daughter. 

 Essex LA acknowledges that there is a problem but they cannot do much about it as they are following guidelines from the government.  We had applied for a statutory assessment on medical needs but this was rejected as medical care does not warrant a statement.  We have ten hours of funding for the care of our daughter but we have been made aware that this can be withdrawn at any given time and that the volunteers could also withdraw their help at any point, putting us in a position as we were in before.  An extremely worrying situation.  

 I participated in the lobby of parliament with Diabetes UK regarding the support in schools.  I was lucky to meet Lord Harrison, who was horrified about my daughter’s case and he brought this up in the House of Lords when they were debating the Queens Speech.  11 Dec 2008: Column 552.

More needs to be done, the guidance available should become legislation for this to stop happening.


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## Adrienne (Apr 28, 2009)

Hi Ceara

I'm Adrienne, mum to a 9 year old girl.   Our story is a bit different.   My daughter has one to one carers.   We moved schools and areas just over a year ago and both schools have been brilliant but it all depends on the head teacher.   Both of our heads have been open to listening and learning from the parents which is a fab start.    I have friends who have been to SENDIST.  All good close friends and I have been told I can share their stories with you.    Having said that I'm knackered today sorry.  I have been organising a weekend away for as many families with T1 diabetes who want to come.  We are off to the Cotswolds.   We are all members of the email group Bev told you about.   We are a group of parents who have a special bond.

Part of this group of mums, myself included, were the parents who got the government to change the wording on the Change4life campaign and within 5 days of the first advert broadcasting so you can see we don't sit on our backsides.   We are very proactive and our big thing is to change schools and make all our children count, Every child matters, infact Every Disabled child matters.      

I have a friend whose son had to be removed from school, it was too dangerous for him to stay plus he was bullied by teachers and children alike and ended up being home ed.  They went to SENDIST and won the lot.  The school apologised.   This boy now has a statement ready for secondary in September.   Its very hard to get a statement for a child with diabetes.   We are going through that ourselves at the moment as it does affect school.   My daughter is out of the classroom a lot, with testing and hypos.  With hypers you can't concentrate fully anyway so all in all its hard.

Another child had to change schools at the age of 6.   The first school was fine for the first year, then slips ups started.   They left her locked outside one day by mistake, she was 5, she had to bash on the windows to be let in!!!!   Why wasn't someone watching her.    Loads of this kids have no hypo awareness especially if they are concentrating on doing something else, like playing.    She had to be out of school for 5 odd weeks until the parents found another school.    I have this childs story in full and have been told I can let you have it.    She goes to another school 2 miles down the road and they can't do enough.    It all starts at the head, and how ignorant or helpful they are.   

Another single mum and child have just lost at SENDIST which is devastating for the T1 children.  Apparently it has been ruled that its ok that no-one at this particular school had to do this 5 year old's finger or pump (injection I think at the time) or make sure he eats, tests, snacks, etc etc.   Apparently he can do it all himself at 5 years of age.  SENDIST have ruled this.  This is appalling.   The nurse lied in court and was found to be lying as was the head but they still ruled against this poor mum.    

I have loads of these stories.

Its not just schools though, lots of hospitals let them down as well.   Our local hospital is absolutely appalling.   We are under a London hospital who is one of the top in the UK for paediatric diabetic care.   I am trying to change things locally along with others but its hard work.   The DSN is rubbish, totally.    

I have done a training session on T1 diabetes at my daughter's school on an inset day.    I have also been asked by another mother locally and done the same talk at her son's school.   I want to do this at all local schools but its getting the word around really.

Anyway so much for me being knackered and quick.   I could go on for ages and ages but need to go and eat and sit........


You may be a very handy person for me and my buddies to know.   Oh by the way we have a website www.childrenwithdiabetesuk.org  We are called the UK Children with Diabetes Advocacy Group and we now have a name for ourselves in the medical world of diabetes in the UK.   We are asked for our opinions now.   We work well with JDRF and generally work well with DUK we also do our own thing.


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## ceara (Apr 29, 2009)

Adrienne

Could I have a copy of the tribunal ruling to see if there are grounds to appeal.  This would never happen with my Panel (even before I had diabetes).  But perhaps being a special school principal I have a better insight and listen to parents more.

Ceara


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## ceara (Apr 29, 2009)

Adrienne

Are SENDIST appeals being taken as a result of the statementing process or as a result of a disability case.  That point is important.

Ceara


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## Adrienne (Apr 29, 2009)

Hi

Just quickly as I have to go to school!!  The SENDIST cases are due to bad care at school, nothing to do with statementing.   Its all to do with lack of support for the children.    I have asked the relevant mum if I can give you the SENDIST ruling.

I'll get back to you.  Thanks.


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## Adrienne (Apr 29, 2009)

ceara said:


> Adrienne
> 
> But perhaps being a special school principal I have a better insight and listen to parents more.
> 
> Ceara



You said it   I think this makes a difference but our to different heads have listened.  To me it is just common decency and knowledge to know that generally parents have a good idea on how to care for there child, especially if there are difficult circumstances like medical problems.   These bad attitudes beggar belief, I don't understand how a human being can be so cold.

Thanks again


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## Adrienne (Apr 29, 2009)

Hi Ceara

I have a couple of quotes from other parents from you.  The first is from a lady who is essentially our 'boss' at the UK Children with Diabetes Advocacy Group, she has a daughter with T1 herself and works without pay full time on any diabetes issues, she travels over the country speaking at seminars etc again without pay !!

She says :  (the 'him' in the first line is you by the way).  

You can tell him its not just children with diabetes, lots of children with medical conditions are being treated very badly.  Someone knows this and its being allowed to  happen.  The problem is that whilst people can and do win SENDIST tribunals parent shouldn't have to be taking schools to sendist tribunals in the first place.   As we have seen, even when some schools have been found "guilty" this only seems to act as a deterrent for a short time and sometimes not at all.  There are no laws with teeth that protect children from discrimination.  Even Ed Balls sent letters saying that if the schools aren't doing the job just move them to another school!!     I think we have two letter saying this.   Most parents are worn out and worn down and dont have the support and energy to take schools to tribunal.  The current laws in the UK are not fit for purpose.

Here is another one from the person who lost at SENDIST for her 5 year old :

I took our case to a SENDIST Disability Discrimination Case as that school destroyed my son's confidence. We lost! To quote from the SENDIST Decision Papers:


However the intervention of medical care for .....(boys name)  is to ensure that his health needs are met and whilst preventing him from having a hypoglycaemic attack, allows him to continue at school, it does not in the words of Mr Justice Mittings, ..'advance his understanding of topics taught'

The parent then goes on to say to our email group :   The SENDIST panel ruled the school do not have to test my son's blood, they do not have to give him a snack & they do not have to treat his hypo. In other words, they ruled you can leave a diabetic child to die, because that is what you risk through not treating a hypo - brain damage, coma or death, none of them particularly what you want for your child!


This particular case is already going to appeal.   This mother has been through hell and back but the bad thing is, she is not the only one.    The lady whose daughter was locked out of the building 'by mistake' is still going through hell and back which is purely due to the knock on effect of how badly the first school her daughter went to treated the child and the family.  The mother has lost friends from that school because of what happened.  The school is high in the OFSTED things but quite frankly so what, when it comes to care, they are totally ignorant, but people don't understand that.   If they see great OFSTED results then that means it is a great school and how dare you argue with that!

Anyway  gotta go again.


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## ceara (Apr 29, 2009)

Has anyone spoken to the Chief Inspector of Schools?  I have spoken to a senior Inspector about earlier stories and he was horrified.  Perhaps we are a bit more 'thick?' over here - when a school is being inspected the parents get the opportunity to speak with the inspecting team about any issues and boy they do (I did a short time as a school inspector).

Has the Equality Commission been involved?

The folk at Strasbourg are good at embarrassing local politicians (use your EMP).

Thanks for the stories.  If anyone wants to contact me directly about a specific issue that they need direction on send me an email and I will get back.

Ceara


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## Adrienne (Apr 29, 2009)

ceara said:


> Has anyone spoken to the Chief Inspector of Schools?  I have spoken to a senior Inspector about earlier stories and he was horrified.  Perhaps we are a bit more 'thick?' over here - when a school is being inspected the parents get the opportunity to speak with the inspecting team about any issues and boy they do (I did a short time as a school inspector).
> 
> Has the Equality Commission been involved?
> 
> ...




Thanks, I'll let the email group know what you have said.  Could be helpful.  The problem is, is that we are tired.  We are up all night testing our children on and off and fighting with the government on things like Change4life, fighting with DUK re the silent assassins and measure up and fighting with medical teams who are so antiquated its shocking and fighting with schools that we are just tired.   No-one else fights for us, if they do we have to pay them!!  Its hard and all we want is the best for our children and their health and to be included at school.  Some get told they can't go on day trips or school holidays etc etc.

Anyway thanks.


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## ceara (Apr 30, 2009)

I have reflected on this last night.  From a school perspective, forget Tribunals, the Chief Inspector of Schools would be your best bet.  Ask for an appointment ASAP.  In addition I would ask the Teacher Unions (NAHT, NAS/UWT, NUT etc) if they would give you a small section in their newsheets to educate the teachers.  The NAHT would be the best (school principals union).  

It is attitudes that need to change and that can only happen through education.  Engage with these folk.

Ceara


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## ceara (Apr 30, 2009)

Just a thought.  Any MPs or MEPs diabetic that you know of?

Ceara


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## Adrienne (Apr 30, 2009)

ceara said:


> Just a thought.  Any MPs or MEPs diabetic that you know of?
> 
> Ceara



Ha ha yes we've gone down that route and I think from what I remember we hone in on parents with children with special needs ie Gordon Brown and any others we can think of, but its still not the same as regards diabetes which is invisible as you know.


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## Adrienne (Apr 30, 2009)

ceara said:


> I have reflected on this last night.  From a school perspective, forget Tribunals, the Chief Inspector of Schools would be your best bet.  Ask for an appointment ASAP.  In addition I would ask the Teacher Unions (NAHT, NAS/UWT, NUT etc) if they would give you a small section in their newsheets to educate the teachers.  The NAHT would be the best (school principals union).
> 
> It is attitudes that need to change and that can only happen through education.  Engage with these folk.
> 
> Ceara



This is a great idea and I'll let the others know.   Thanks.


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## ceara (Apr 30, 2009)

Still trying to work out the difference between mainland and Northern Ireland.  Has anyone had their children taught at home by school staff due to them missing school due to not being well?

Do you have classroom assistants for non statemented children?

I am almost certain that my union (NAHT) here in NI will run a story for diabetes in children.

Ceara


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## tekark (May 8, 2009)

*Schools (Health Support) Bill*

Does anyone have details of the schools (health support) bill that was being read for the second time today in parliament - e.g. a transcript or link?

I heard there was an article on GM TV this morning about this, and I guess this relates to the following post on diabetes UK:

http://www.diabetes.org.uk/About_us/News_Landing_Page/Schoolboy-with-diabetes-asks-Prime-Minister-for-better-support-at-school/

However it doesn't really help much, and the YouTube interview with the boy in question completely evades all the issues that we parents of T1 diabetics face in getting support for our children at school. Young children cannot "just get on with it" they need a huge amount of dedicated support, particularly in the earlier years if they are hypo unaware or unable to self manage!

Any help please!


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## bev (May 9, 2009)

Hi Tekark,
I am a member of the other forum for parents of type 1 children. They are awaiting the transcript - when they do i will forward it onto here for you. Are you a member of the CWD forum? If not, join the emailing list it really is a brilliant place for advice, information etc.. Bev


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## ceara (May 25, 2009)

Hi All

I have read all your letters/posts and have spoken to the appropriate folk here in Northern Ireland, as well as educationalists from the European Commission.  Now this is important (listen carefully friends).  

I, in my tribunal life would consider a child with diabetes in a school as having 'additional educational needs' (AEN); we are about to put out to consultation a Review of Special Education and (AEN) will form part of this review.  It is important that an input is made from diabetic parents/children and adults as a chance like this comes around once in a generation.

Ideally, we need Northern Ireland groups to respond to the Review.

Ceara


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## bev (May 26, 2009)

Hi Ceara! How are you? You havent been on for a while - now i know why - you have been busy!
I have passed a copy of your message over to the childrens forum and i am sure you will get a lot of interest. Can you tell me exactly what input you think would be required? We can give you many stoires of how things have gone wrong with schools dealing with diabetic children - but is that what you need? Thanks. Bev


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## ceara (May 26, 2009)

Hi Bev

The time for personal stories is now past.  We have a blank sheet here, what is required is for enlightened folk to put forward their suggestions as to how the educational needs of diabetic children could be best met in schools while at the same time ensuring that their medical needs are met in a sympathic environment.

The Review will be published very soon.  It would be important that DUK make a submission, but the most forceful group would be parents from Northern Ireland.  If it could be arranged we could all meet at my school some time in the future.

Just one person from NI contacted me and my reply has yet to be read.  Hardly a great lobbying force.

Ceara


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