# Social Services involvement



## stella (Aug 13, 2016)

Hi there. .I'm a new member and this is my first post. I'll give you an outline of my situation. .
my daughter is 14yrs type 1 since aged 7.
For the past 4 years her hba1c has steadily risen from 9-14. For the first two yrs since diagnosis she was prefect. .as perfect as a diabetic could be.. Then came the high's slowly becoming more frequent. Puberty was the reason given by the hospital..her doses were increased we tried the pump (no difference) so she's now back on the pen. We tried everything. .limiting carbs at bedtime..always weiging her food and carb counting.  Even waking up at 3am to test so I could "catch" her levels spiking..Over the last 4 weeks her levels have dramatically reduced..typically between 5 and 10 which for her is good considering her levels were in the teen's and 20's. Her latest hba1c was still 14 dispite lower levels over a 3 week period. This then prompted the dr to refer us to social services claiming that we had "falsified " her readings over the 3 weeks she was good. 
Further to their accusation they are also saying we are not supervising her injections as she's not getting the insulin she needs.  
We went to the hospital on numerous occasions so baffled as to why the insulin wasn't brining her levels down. 
So now it's escalated to them wanting to put my daughter on a child protection plan.  We as a family are devastated. .no history with ss ever and now this !! As parents we all put our diabetic children at the forefront of our lives so I know you'll understand how devestating this is..
has anyone been through anything similar or had a child/teen where nothing seems to work brining the levels down. .I'm going crazy with worry ..thank you for taking the time to read. X


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## grovesy (Aug 13, 2016)

Welcome, sorry I can't give any advice, I am sure someone will be along to give advice!


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## Amigo (Aug 13, 2016)

Stella, I find myself horrified and very concerned at this but the provisio is we only have your side of the story (which I don't doubt but need to make that point).

Were you invited to a multi agency Case Conference to put your views forward? Is there any way you can get supportive medical advice which would call their assertions into question? You have to remember that most of the professionals in this case will actually be clueless about the management of type 1 diabetes in children and will rely solely on the medical advice they've received. By putting your daughter on the Child Protection Register will mean surveillance and judgements about your parenting and I can fully understand your outrage if as you say, you're doing your best. So many parents could find themselves in this position with teenagers who don't always stay on track with their D!
In your situation I'd be seeking legal advice and I'd be threatening the Council with action under Article 8 of the Human Rights Act (believe me this one frightens them) which is a right to private family life without unwarranted State surveillance. 

https://www.liberty-human-rights.or...s-act/article-8-right-private-and-family-life

Every so often, medics get it spectacularly wrong and although they're acting in what they believe is a child's best interest, it sets in motion action that is unwarranted. I'm not going to pretend it's easy disproving their medical opinions but you may need an independent assessment to prove this is in no way neglect of her insulin needs. I'm not sure if DUK could help with this because this raises a vital issue for the parents of children of type 1 diabetic children who may find themselves labelled because a child isn't responding as expected or is non compliant. I feel for you. Stay reasonable but stay strong. Keep very careful records about the efforts you have made and hospital appts. you have kept. 
Have they even spoken to your daughter independently because she's old enough to give her own account of what's happening.

I wish you luck with this and will post again if I can think of anything else that might help.


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## Northerner (Aug 13, 2016)

Hi Stella, I'm very sorry to hear this  I have no expertise in this at all, but it would certainly be worth contacting the Diabetes UK Helpline service as they have trained advisors: https://www.diabetes.org.uk/helpline

You might also find some help from other parents on the Children With Diabetes UK group, their website is http://www.childrenwithdiabetesuk.org/

They have a Facebook group also, details on their website.


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## stella (Aug 13, 2016)

grovesy said:


> Welcome, sorry I can't give any advice, I am sure someone will be along to give advice!


thank you


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## stella (Aug 13, 2016)

Northerner said:


> Hi Stella, I'm very sorry to hear this  I have no expertise in this at all, but it would certainly be worth contacting the Diabetes UK Helpline service as they have trained advisors: https://www.diabetes.org.uk/helpline
> 
> You might also find some help from other parents on the Children With Diabetes UK group, their website is http://www.childrenwithdiabetesuk.org/
> 
> They have a Facebook group also, details on their website.


thank you


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## stella (Aug 13, 2016)

Amigo said:


> Stella, I find myself horrified and very concerned at this but the provisio is we only have your side of the story (which I don't doubt but need to make that point).
> 
> Were you invited to a multi agency Case Conference to put your views forward? Is there any way you can get supportive medical advice which would call their assertions into question? You have to remember that most of the professionals in this case will actually be clueless about the management of type 1 diabetes in children and will rely solely on the medical advice they've received. By putting your daughter on the Child Protection Register will mean surveillance and judgements about your parenting and I can fully understand your outrage if as you say, you're doing your best. So many parents could find themselves in this position with teenagers who don't always stay on track with their D!
> In your situation I'd be seeking legal advice and I'd be threatening the Council with action under Article 8 of the Human Rights Act (believe me this one frightens them) which is a right to private family life without unwarranted State surveillance.
> ...


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## stella (Aug 13, 2016)

Amigo, thank you so much for the reply and taking time to read my post. Firstly yes i had a home visit where the social worker interviewed myself and my partner then my daughter alone. She told them exaclty the same as us, that we supervise her injections (apart from at school) and that we were doing everthing in our power to moniter her diabetes. This then progressed to a Child in need meeting with the medical proffessionals involed with us an a CIN social worker. We tried to get our points across filled with printed off information from diabetes websites etc saying that puberty plays a huge factor in the effectivness of insuin, insulin resistance and facts about hba1c (how this cant be lowered with only 3 weeks of ok readings) we were constantly cut off, not allowing us to have our say. it got quite emotional which is understandable . i asked the dr's many question but they just looked at me blankly and gave me no answer which again was so frustraing. all in all the meeting was a farce, we were only given the initial refferal report 5 mins before the meeting as the sw didnt have 'time' to bring it to us beforehand so we were totally unprepared and also we were not offered an advocate. So the allegations are that we falsified her blood readings (which we can prove with a more recent hba1c test) and that we are not giving out daughter insulin, which again we can prove as she has lumps from multiple injections and the prescription which is picked up every 2-3 weeks. I feel totaly alone and helpless because like you said the sw has no clue or even bothered to do any research about diabetes so she's deferring with the dr's. i cant even discribe the amount of effort we put into our daughter and her diabetes managment so to have this put upon us is heartbreaking. I will stay strong and find the facts i need to prove them wrong. thanks again so much.


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## stella (Aug 13, 2016)

Northerner said:


> Hi Stella, I'm very sorry to hear this  I have no expertise in this at all, but it would certainly be worth contacting the Diabetes UK Helpline service as they have trained advisors: https://www.diabetes.org.uk/helpline
> 
> You might also find some help from other parents on the Children With Diabetes UK group, their website is http://www.childrenwithdiabetesuk.org/
> 
> They have a Facebook group also, details on their website.


thank you


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## Amigo (Aug 13, 2016)

Stella, I find myself incensed by what you are being put through and would urge you to fight it legally. I'm not sure if the meeting resulted in your daughter being included on the Child Protection register with ongoing supervision or whether that decision hasn't been made. This sounds to me to be a massive abuse of process, badly handled and based on very shaky grounds from the GP. The very least you need to do is put in a formal complaint against the Local Authority citing abuse of process, procedural failures and poor communication which left you unable to prepare for the 'charges' levelled at you.

I'd urge you to seek legal advice. An unfounded allegation like this cannot go unchallenged and it must be having a huge emotional impact on the whole family. You might be interested to read the outcome of this case;

https://www.theguardian.com/society/2013/mar/14/couple-accused-of-child-abuse-win-damages

I wish you well x


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## HOBIE (Aug 13, 2016)

Welcome Stella. I have had Diabetes for 50ys now & there are some medical staff who have no idea how hard it can be for all involved. I am a qualified "Patient Leader". by NHS. There should be one in your area to ask advise etc.  Good luck


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## AndBreathe (Aug 13, 2016)

Oh dear @stella , you guys are having quite a time of it.

I can't comment at all on any of the Social Services stuff, as I have no knowledge of it at all.

On the point of what you can and can't prove, that's always a tricky one.  A new HbA1c will hopefully come around quickly, and when it does, is it done at a clinic/hospital where your daughter is known?  Either way, I would be inclined to capture the blood collection in a photograph, with the paperwork in the shot.

Whilst I am not doubting you for an instant; how could I?  However, meter readings are only a record of a test, not a record of a test on any given person.  So, those would provide a potential balance of probability, not proof.  Similarly the injection sites prove injections have occurred, not necessarily how frequently, or that the correct amounts have been administered.

Obviously, that's all utterly rubbish from your perspective, but I'm just trying to enlighten you on how things could be being viewed.

Bearing in mind your daughter's age and the hormonal changes she is undoubtedly experiencing, I wonder if she is significantly insulin resistant, or if her injection sites, which you have told us are bulky and damaged, are damaged in such a way she has absorption issues.  Does your daughter carry any extra weight?  Sometimes when folks are insulin resistant they tend to gain weight easily, due to the way the body deals with lots of insulin.  As a wrinkly T2, as opposed youthful, teenager T1, so I could have got a couple of things wrong there!  I'm sure if I have one of the others will correct me!

Finally, is there any way your daughter could be eating more than you know about?  I have heard of T1s going through a bit of a rebellious stage and eating additional "stuff" when away from parental gaze; as sort of exercising of will.  Your daughter must be bewildered about what's going on, when she's not exactly getting any positive feedback or recognition for her improved levels.

What does she think of it all?  Has she spoken about it much? 

As a parent, it seems too me the teens are such a challenging time, without T1 in the mix.  I feel for you all, and do hope you can resolved these issues promptly.


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## Pumper_Sue (Aug 13, 2016)

So if the numbers were falsified who's readings were on the meter? Personally as others have said I would get legal advise and I would also ask your GP for a transfer to another hospital care team.
Has this so called bunch of professionals changed your daughters insulin type to see if it's the actual insulin she has a resistance to? Have they fitted a CGM or Libre so that they can see what is happening? If not then they are negligent.


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## stella (Aug 18, 2016)

Amigo said:


> Stella, I find myself incensed by what you are being put through and would urge you to fight it legally. I'm not sure if the meeting resulted in your daughter being included on the Child Protection register with ongoing supervision or whether that decision hasn't been made. This sounds to me to be a massive abuse of process, badly handled and based on very shaky grounds from the GP. The very least you need to do is put in a formal complaint against the Local Authority citing abuse of process, procedural failures and poor communication which left you unable to prepare for the 'charges' levelled at you.
> 
> I'd urge you to seek legal advice. An unfounded allegation like this cannot go unchallenged and it must be having a huge emotional impact on the whole family. You might be interested to read the outcome of this case;
> 
> ...


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## stella (Aug 18, 2016)

Thank you so much for your support I'm still waiting for the conference date. .but I've made a complaint to my sw manager. .she was really apologetic and it was clear the sw didn't follow procedures. .saying that my daughter has another hba1c test on Monday so at least that will prove I'm not forging her results. When this is over I am going to make a massive complaint.  It's been emotional but I feel strong I can beat this with research etc. . Thanks Again x


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## stella (Aug 18, 2016)

AndBreathe said:


> Oh dear @stella , you guys are having quite a time of it.
> 
> I can't comment at all on any of the Social Services stuff, as I have no knowledge of it at all.
> 
> ...


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## stella (Aug 18, 2016)

Thank you for your views..yes my daughter could be sneaking food although she says she hasn't. .she's unsupervised at school although the hospital said they would train a teacher or send a nurse round. .this has never been done  she's a slim. .tall. .active girl. No test or anything has been done by the hospital to see if she's resistant nor a change or insulin brand etc.. nothing has been explored. .it seems like they're clueless so pointing the finger at us as parents !! She's obviously upset and frustrated like us..anxious if she's "going to be taken away from us " nothing a 14yr old should think ! Anyway I'm hopeful we'll get through this as I've done a lot of research that questions what the Dr's alledge! !
Thanks again for your time x


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## stella (Aug 18, 2016)

Pumper_Sue said:


> So if the numbers were falsified who's readings were on the meter? Personally as others have said I would get legal advise and I would also ask your GP for a transfer to another hospital care team.
> Has this so called bunch of professionals changed your daughters insulin type to see if it's the actual insulin she has a resistance to? Have they fitted a CGM or Libre so that they can see what is happening? If not then they are negligent.


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## Amigo (Aug 18, 2016)

Stella, it sounds like you're on the right track in countering these ridiculous allegations and Social Services will need a whole lot more sound evidence to put your daughter on a Child Protection Register than some ill considered one off disparity in figures from the GP. Why on earth after all these years of carefully managing her condition when she was younger and vulnerable could they imagine you'd abandon her welfare at 14!
The problem you'll have at the Conference is keeping your emotions in check but hopefully you won't be going alone.
Go prepared, stay as calm and focussed as possible but most of all demonstrate your reasonableness. Make it clear that these actions are the ones damaging to your daughter and you have lost confidence in your GP's knowledge of the complexities around adolescent diabetes. A lack of understanding that has caused a massive abuse of process when discussions with yourselves and your daughter could have resolved this matter.
Hope her next Hba1c is good. Make it clear you have no problem with medical surveillance because your daughters health is your primary concern but not under the umbrella of child protection because it's totally unjustified as parents with an unblemished history of excellent parenting.

I think you'll be fine!  But make the complaint! Don't appear cocky but certainly make it clear you're not prepared to be a victim.

All the best, Amigo


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## stella (Aug 18, 2016)

You've hit the nail on the head !! I will certainly be taking your advice. .I can't tell you how much it means to me for your help and kind words. .I'll keep you posted xx


Amigo said:


> Stella, it sounds like you're on the right track in countering these ridiculous allegations and Social Services will need a whole lot more sound evidence to put your daughter on a Child Protection Register than some ill considered one off disparity in figures from the GP. Why on earth after all these years of carefully managing her condition when she was younger and vulnerable could they imagine you'd abandon her welfare at 14!
> The problem you'll have at the Conference is keeping your emotions in check but hopefully you won't be going alone.
> Go prepared, stay as calm and focussed as possible but most of all demonstrate your reasonableness. Make it clear that these actions are the ones damaging to your daughter and you have lost confidence in your GP's knowledge of the complexities around adolescent diabetes. A lack of understanding that has caused a massive abuse of process when discussions with yourselves and your daughter could have resolved this matter.
> Hope her next Hba1c is good. Make it clear you have no problem with medical surveillance because your daughters health is your primary concern but not under the umbrella of child protection because it's totally unjustified as parents with an unblemished history of excellent parenting.
> ...


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## Pumper_Sue (Aug 19, 2016)

@Amigo I'm not sure but think Stella is having problems with the hospital team not the GP.
@stella have you considered taking a tape recorder/Dictaphone into the meeting with you?


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## Lilian (Aug 19, 2016)

Brittle diabetes mellitus (or labile diabetes) is a term used to describe particularly hard to control type 1 diabetes. Those people who have brittle diabetes will experience *frequent*, extreme *swings* in blood glucose levels, causing *hyperglycemia* or *hypoglycemia*.


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## Tina63 (Aug 25, 2016)

I take it your daughter is on Novorapid with food and carb counting for flexible intake - as opposed to fixed doses of insulin?

It all sounds horribly shocking.


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## Kiera Tuck (Aug 26, 2016)

This might seem like a silly answer but did you check the expiry date of the insulin?
My son was diagnosed with type one diabetes on 1St August 2016. My first delivery of a box of 5 novorapid refills went straight into the fridge. I decided to write a list of all the medication and equipment that's needed to be ordered and I noticed the expiry date was 02/16 yes February this year.... This could of killed my two yr old as the insulin wouldn't of worked. I was fuming, the paediatrician and diabetic team were fuming. The chemist just shrugged it off, said don't know who gave you that and gave me a new in date box!!
 that It might be worth double checking just incase. X
I really feel for you hun. X


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## Copepod (Aug 27, 2016)

You're right that it's important to check expiry date of insulin. Preferably BEFORE you leave chemist, so that, if it's in date, but not long to expiry, it can be reissued to someone else. If you take it out the door, then return, it will be wasted. I've left short dated boxes in chemist, as I get 4 boxes at a time, to last me nearly a year.
However, while it's not advisable to use out of date insulin, it won't kill you. It might be less effective.


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## Cate (Sep 13, 2016)

I hope things have settled down a bit with the SW side by now?

I was a terrible T1 teenager.  I abused insulin as a means of controlling my weight - missing out pen injections at school completely, and eating stuff I shouldn't have, both at school and at home.  It's taken me years to get over it, I never told *anyone* about it until recently (some 25 years later!).  It's beginning to be a recognised eating disorder - I saw a counsellor at my hospital clinic every month for a year and I talked to her about it as part of that process.

I hope that's not what your daughter is doing, but it could be - I was great at saying all the right things, and making my parents believe I was doing them, too.


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## stella (Sep 13, 2016)

Hi. .I'm glad your getting over it now. .it did cross my mind and maybe she was but she's always been so slim and athletic. .and tbh probably not that bright that she'd even think of that !! Social service have put her on a child in need plan. .which basically outlines what we as parents and the school should be doing to support her. .although we have al ways Done what they set out ! The dr's have been really bad..adamant we were wilfully neglecting her but the rest of the panel decided it was not the case. .Could've been worse I suppose. .I'm still going to make a complaint about the hospital because as "professionals " they didn't do enough to investigate or try new things. . Neglect on their part I think !! Thanks for your comment. .I hope your doing well xx


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## Amigo (Sep 13, 2016)

stella said:


> Hi. .I'm glad your getting over it now. .it did cross my mind and maybe she was but she's always been so slim and athletic. .and tbh probably not that bright that she'd even think of that !! Social service have put her on a child in need plan. .which basically outlines what we as parents and the school should be doing to support her. .although we have al ways Done what they set out ! The dr's have been really bad..adamant we were wilfully neglecting her but the rest of the panel decided it was not the case. .Could've been worse I suppose. .I'm still going to make a complaint about the hospital because as "professionals " they didn't do enough to investigate or try new things. . Neglect on their part I think !! Thanks for your comment. .I hope your doing well xx



Glad things have resolved in your favour to some extent Stella. Your case stirred up anger in me and I really think you should make an official complain about the actions of the hospital doctors. Sending best wishes, Amigo


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## Copepod (Sep 14, 2016)

Glad to hear you've got some answers / plans for future. You may want to complain about your diabetes team, but unless there's an alternative hospital nearby to which you can transfer, you may have to maintain your relationship. Have you investigated transferring your daughter's care to another hospital?


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## SB2015 (Sep 14, 2016)

Only just read this thread.  I am glad I am not having my BP checked today!! What an awful situation to be out in.  I am glad that things are resolved now but definitely think a complaint needs to be made.

I have had the term Brittle Diabetes used to describe my condition but only by doctors/consultants/ ... Who have absolutely no knowledge of diabetes apart from what they did in training many years ago.  Over friend thought I must be 'brittle' as I have had a hypo!!!!  Is there a T1 who hasn't and doesn't?  I get the impression that it was a term used when there were not the variety of treatments available.


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## stella (Sep 14, 2016)

Amigo said:


> Glad things have resolved in your favour to some extent Stella. Your case stirred up anger in me and I really think you should make an official complain about the actions of the hospital doctors. Sending best wishes, Amigo





Amigo said:


> Glad things have resolved in your favour to some extent Stella. Your case stirred up anger in me and I really think you should make an official complain about the actions of the hospital doctors. Sending best wishes, Amigo


Thanks again Amigo. .I fully intend to !!


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## stella (Sep 14, 2016)

Copepod said:


> Glad to hear you've got some answers / plans for future. You may want to complain about your diabetes team, but unless there's an alternative hospital nearby to which you can transfer, you may have to maintain your relationship. Have you investigated transferring your daughter's care to another hospital?


Yes I have enquired about a transfer. . I've made it quite clear I'm not comfortable being in the same room with them after their accusations but I think for the duration of the plan I have to bite my tongue! !


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