Care proceedings

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MelanieW

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Hi, I only registered last night and am new to all this! I want to ask if anyone else has experienced anything like what I, and my daughter are going through at the moment.

My daughter is 15 (yes, stroppy teenager,'mind of her own', etc., etc! But lovely with it!), and has been diabetic since she was aged 9. We have never managed to achieve vey good control, though it hasn't been for the lack of trying. She was also diagnosed with Chronic Fatigue Syndrome/ME nearly 3 years ago, which has just made control even more difficult. Her condition re ME has deteriorated to the point where she is unable to accesss her home turor sessions, and life is pretty dreadful, for both of us.

Her HBA1Cs are horrendous, and although daughter knows all the 'scare' stories, etc., she is, at times, just unable to lift her arms to do her injections, but she won't allow me to give them for her. Add to that the times when she's in 'stroppy' mode and simply WON'T do them, I have become the nag from hell! As a result of my allowing her to attend and sing in a concert before Christmas, (and who would say no when their child is usually a virtual prisoner to their medical problems?), the school and her paediatrician have decided they need to involve social services! The paediatrician has gone one step further and threatened care proceedings if my daughter doesn't agree to the treatment he has advised; admission to hospital to "sort out her blood sugars", and a referral to CAMHS for her ME, both of which she has refused, and I respect her wishes. The doctor says he respects her wishes, but obviously doesn't as he seems to be saying "do as I say, OR ELSE".

I feel bullied by the 'big guns', and have been made to feel that I'm a really bad mother. Has anyone else experience anything like this? I feel isolated and, I'm desperate for more info re the teenagers who run high sugars, maybe even have been admitted to hospital in DKA - which, incidentally, my daughter never has!

Any advice, support, would be much appreciated. so sorry this is rather long winded - believe me, I did try and cut it short!
Thanks, MW
 
Hi there Melanie and welcome to the forum my goodness what an awful lot for not only your daughter but yourself to deal with, sorry i have no experience with this so feel offering advice will not get you far, but I just wanted to welcome you to the site, We may not be able to do anything face to face for you but we will give you all the support you need via this place xx

Good luck with it all.
 
Steff2010 said:
Hi there Melanie and welcome to the forum my goodness what an awful lot for not only your daughter but yourself to deal with, sorry i have no experience with this so feel offering advice will not get you far, but I just wanted to welcome you to the site, We may not be able to do anything face to face for you but we will give you all the support you need via this place xx

Good luck with it all.
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Thanks! I think I'm going to need all the help and support I can get - especially after our GP advised me yesterday to see a solicitor! It's an absolute nightmare, and one that no caring parent should find themselves in.
MW
 
Welcome to the forums.

Having adopted a youngster I understand how you feel about social services and ther high handed way. It is difficult to fight them, although may be possible to work with them after a fashion. As your daughter is under 18, but too old to be considered a child she will probably come under the wing of the young peoples team, and get her own socail worker.

Perhaps an alternative might be for them to send someon into your home to monitor how things are going and to help with practical day to day things. It is very invasive, but it might be a way forward for you and your family.

Do you have any other adult support? Is your family (parents, brothers/sisters etc) around who may be able to help out? Is there a counselor at school, or another independent person, who could may be talk to your daughter so that she can have her say without anyone else listening in. She will have her own thoughts, and some teenagers find it difficult to talk to their parents.

Hopefully parents of diabetic children and teenagers will have some ideas you may like to try. There are many different strategies for coping.

If you want to PM me either under caroline wilson (screen name for home) or caroline (screen name for work) I'll try to support you, and offer any ideas if I can. It is a tough time for you and her.

You have made a brilliant start in getting help by comming here, and hopefully we will go in your favour.
 
Hi MW
welcome to the forum when is your daughter 16 ? because my son just 16 just recieved a letter from GP yesterday saying that he is now able to choose his own family doc and decide on his own medical care... might help her if she felt she was in a little bit more control good luck xx
 
MelanieW said:
The paediatrician has gone one step further and threatened care proceedings if my daughter doesn't agree to the treatment he has advised; admission to hospital to "sort out her blood sugars", MW
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Sounds like he/she knows nothing about diabetes. In my own experience and those of other diabetics I know hospitals can only find a starting point. The regime - time of medication, time and type of meals, exercise (if any) etc. - is so different from real life that it would be unlikely to serve any useful purpose. Your daughter would only be alienated further. She needs bundles of support NOT threats!
 
Hi Melanie,

Welcome to the forum, Im a 20 yr old with high blood sugar. I went through the stroppy "im not doing it/Im not diabetic" faze and Its just something I've had to grow out of. Ive been diabetic for 6 years and my levels have NEVER been good, 15+ usually 20+. I am so sorry your both going through so much. I was born with one hand so I know roughly of the fight with mind over matter when other things are getting in the way. My doctors never cared what my levels were like. My HbA1c is at 11.8 and thats the lowest its been. I feel totally alone!

I think its terrible that the paediatrician is acting in this way. Is there anyone else you can talk to about her care? Go above him? She needs support not threats. Is there any counselling available? The hospital clinic im being referred to has a special counselling service for diabetics. It might help her and the doctors if everyone understood how she feels and shes id given time to explain everything without feeling pressured. The docs might then realise how her ME affects her control and willingness to control .If she ever feels like talking to someone her own age (roughly) bout it I'm here.


This site is amazing with the help and support and advice.


My sister has been trough Cahms because of anxiety problems and problems with school. They have been fantastic with her.
 
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Hi Melanie,

Although I can not offer any specific advice, I just wanted to say that I am very sorry to hear of the terrible time that you are going through.

I am the prent of an 18 year old son who has some very complex anxiety problems. He is agoraphobic, suffers severe social anxiety disorder, depression and OCD. As such, I do have some experience with CAMHS.
I have found them to be very helpful and very kind, to both me and my son.
I wondered if it might be helpful to you to be in touch with them?

Because my son is 18 he is now being refered to the adult metal health servies, I am very worried about this as, I believe, that the adult services are not as good as CAMHS.

If at all possible, try to get some support from CAMHS...they may even visit you at home.

Best of luck and try to stay strong! Best wishes, Ellowyne x
 
Ellowyne said:
Hi Melanie,

Although I can not offer any specific advice, I just wanted to say that I am very sorry to hear of the terrible time that you are going through.

I am the prent of an 18 year old son who has some very complex anxiety problems. He is agoraphobic, suffers severe social anxiety disorder, depression and OCD. As such, I do have some experience with CAMHS.
I have found them to be very helpful and very kind, to both me and my son.
I wondered if it might be helpful to you to be in touch with them?

Because my son is 18 he is now being refered to the adult metal health servies, I am very worried about this as, I believe, that the adult services are not as good as CAMHS.

If at all possible, try to get some support from CAMHS...they may even visit you at home.

Best of luck and try to stay strong! Best wishes, Ellowyne x
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Hi, thanks for your support. My daughter has actually asked to reply to you so here goes;

"Whilst some people DO find CAHMS helpful, it IS down to personal preferences, and I have been offered it, but turned it down, as I don't see it would be of any help. I have several people I can talk to, family members and family friends, including my mum, who unlike some of my friends and their parents, I find very easy to talk to, and I don't see that talking to a complete stranger would be of any use to me, apart from wasting my time, and also energy. And besides, talking isn't what I need, its peace and understanding, as all this excess stress and pressure is NOT helping my M.E at all. It's not that I'm refusing to do my injections, just some times I CAN'T. When I am able to, I do do them, and I frequently test my blood sugars throughout the day, as my mum can set it up for me and all I have to do is prick my finger. But on my bad days, which are more often than good, I don't have the energy to sit up and do my insulin. And from past experience, if my mum administered it for me, lying down, it would hurt. A lot. And I'm not prepared to do that, and my mum understands that. However the Doctor doesn't seem to. Obviously not a diabetic. Injecting is a very personal thing, and I'm not comfortable with ANYONE doing my injections. Thats not to say I don't trust my mum, because I do, and I get on very well with her. It's just a personal choice. On the occasions when I've been so tired and out of it, my mum HAS done my injection for me, because I'm not even aware of it, and she has my permission to do that, but if she did so without my permission, it would be assault. And then she'd be being ridiculed by god knows who for doing so. I find it very unfair, and unjust, that all the blame is being put on my mum, when at the age of 15, it's my responsibility, and she can't pin me down and force me to do my injection, so what is she supposed to do? I swear to god these 'professionals' have had their brains removed."

Gosh, I did say she has a mind of her own lol! I'm trying to obtain legal advice, which in itself isn't easy when the ?s are in short supply, but I shall keep trying! MW
 
Hi Melanie - are you working and in a union ? Seems a strange question but sometimes as part of the union membership you get access to an hour or two of a solicitors time.

If not then have a look at one of the mental health web-sites as it seems (reading between the lines) that the Drs are hinting that they want to go down that route. It might help and there may be something to tell you your and your daughter's rights.
 
Hello

I wonder if getting a pump would help? Then there would only be a set change once every few days rather than all the painful injections. I believe they do take a far amount of education and getting used to though (I dont actually have one myself - yet). It might be worth discussing this with the doctors???
 
The only reason I say a counsellor is because then they can put it to the doctors aswell. so its not just you and your mum, docs tend to listen to other docs before they will listen to the patient.
 
HI Melanie and daughter,

I completely understand how frustrating this must make you feel, the last thing you want/need is to have social services adding to your stress - it must make you both feel desperate.

What would *you* think is a good way forward so that both you and your mum feel that your in control of this situation? Obviously you realise the implications of having a high hba1c and what all that entails - so do you think there is a way round all this?

It seems to me that neither of you are being *heard* and this is what is frustrating for you both. Have you thought about writing a letter to your GP telling him/her exactly what you have just posted on here? I think they are forgetting that you are individuals with the same goal in mind and only want the best for you both. The message you have just posted on here explains things very well and i think any GP would understand that you are doing your best under the circumstances.

On another point, have you thought about an insulin pump? You would only need to change it every 3 days which might help with the privacy part of this and also you can get better control on a pump. My son (11) has been on one for 5 months and his hba1c has come down already. You get a lot more freedom on the pump and can adjust things in tiny amounts to suit your body/circumstances.

I am not sure what else to suggest as it seems you are both trying really hard to tell people that its not deliberate mismanagement of diabetes - its simply the circumstances you both find yourselves in.

I hope things dont get too serious with social services and that you can all find a way to resolve this with everyones best interests at heart.
 
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I'm Melanie's daughterrr

Caroline said:
Welcome to the forums.

Having adopted a youngster I understand how you feel about social services and ther high handed way. It is difficult to fight them, although may be possible to work with them after a fashion. As your daughter is under 18, but too old to be considered a child she will probably come under the wing of the young peoples team, and get her own socail worker.

Perhaps an alternative might be for them to send someon into your home to monitor how things are going and to help with practical day to day things. It is very invasive, but it might be a way forward for you and your family.

Do you have any other adult support? Is your family (parents, brothers/sisters etc) around who may be able to help out? Is there a counselor at school, or another independent person, who could may be talk to your daughter so that she can have her say without anyone else listening in. She will have her own thoughts, and some teenagers find it difficult to talk to their parents.

Hopefully parents of diabetic children and teenagers will have some ideas you may like to try. There are many different strategies for coping.

If you want to PM me either under caroline wilson (screen name for home) or caroline (screen name for work) I'll try to support you, and offer any ideas if I can. It is a tough time for you and her.

You have made a brilliant start in getting help by comming here, and hopefully we will go in your favour.
Click to expand...



First of all, I'd like to point out that my mother got her first thread wrong. 'Stroppy teenager'? pfffttt. 😛
The thing is, it's not that I need to talk to anyone, and if I ever DO need to talk to anyone, I CAN talk to my mum, as I'm very close to her. That's not the problem. The problem is the doctor doesn't seem to understand the concept of Chronic Fatigue Syndrome/M.E, in fact on one occasion he even said that he believes my tiredness is 50% down to my diabetes. Which, he said it all there anyway, because it isn't JUST 'tiredness'. And so all he's even been bothered with, is sorting my diabetes control out. Which fair enough, that is the first priority, obviously with the dangers of high blood sugars and everything. The problem, is when I have no energy, and I mean NO energy, even to get up the stairs, a few times I've had to sleep downstairs as I couldn't get upstairs, and on other occasions my mum has had to help me wash my hair, brush my teeth, get dressed, etc. etc. etc. And so I'm sure you can understand with this, why most of the time, I can't do my insulin. However when I DO have the energy, I DO do my insulin. The doctor is now blaming my mum for my poorly controlled bloods (I hate that term! It makes it sound like its the diabetics fault, when most of the time, especially teenagers, its hormones that cause the bloods to go sky high), when its neither her fault nor mine. And I can't see why Social Services even needed to be contacted. I mean for gods sake, all the things in the news about children being abused and the Social Services did nothing? Maybe if they spent more time sticking their big noses into REAL problems, instead of pointless issues they're not needed in, a few children might be saved.
 
''On another point, have you thought about an insulin pump? You would only need to change it every 3 days which might help with the privacy part of this and also you can get better control on a pump. My son (11) has been on one for 5 months and his hba1c has come down already. You get a lot more freedom on the pump and can adjust things in tiny amounts to suit your body/circumstances.''


Both me and my mum have asked for a pump, but my doctor insisted that I have to have more 'commitment', to carb counting. And that I'd need to get my blood sugars down first anyway. Quite why this is necessary I don't know, as if my blood sugars were down, I wouldn't NEED a pump?!
 
Hi Sophieee

the stress of all this will affect your blood sugars. It sounds like the Dr is using the pump as a carrot. I can understand the bit about carb counting as you have to adjust the dose to what you are eating but I thought that the pump was recommended if you had tried other avenues and still failed to get an 'acceptable' HBA1C.

Maybe you or your Mum could look in the NICE recommendations of when a pump is allowed it could help in discussions with your Dr.

Hope you get things sorted out
take care
 
am64 said:
Hi MW
welcome to the forum when is your daughter 16 ? because my son just 16 just recieved a letter from GP yesterday saying that he is now able to choose his own family doc and decide on his own medical care... might help her if she felt she was in a little bit more control good luck xx
Click to expand...

She's 16 in November. The local hospital have refused to 'take her back' because she 'fell out' with her previous doctor, even though that doctor is no longer there, and we have been told she can't be transferred early to adult care, which, I agree with you, would be better for her. She has shown herself to be a very mature young woman, on many levels, yet she is still deemed 'too young' to decide for herself!

She needs a doctor who truly understands both diabetes AND CFS/ME, though as I have come to realise, there is about as much chance of us finding one such doctor, as catching diamonds in raindrops! It helps though, that others are being supportive of my daughter and I. Thanks.MW
 
hi again sophie and melenie
I do understand M.E my sister in law has it and at one time became bedridden,and moved downstairs ...she had alot of problems with getting her incapacity benefit because the doc didnt properly understand the condition. I totaly understand where you are comming from re sometimes not being able to take the insulin. My SiL got to a point when she couldnt speak for long cos she hadnt got the energy...She met a guy in stoke poges in buckinghamshire who did a therapy for me and it worked for her and she now paints and lives a relatively oridinary life ...it will never go away but she is able to manage it.
It seems to me the ME needs to be helped ...what help have they offered? or is that it... the counsilling? are you in contact with any ME support forums ? I will try and find out more about the therapy my sis in law had if you like.
 
i think its called the lightening process...

http://en.wikipedia.org/wiki/The_Lightning_Process

they look at M.E is a physical illness not a psychological one

google the lightening process it might help x I must add tho it worked for my sisterinlaw it did not for another friends son so good luck x
 
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