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Here are some suggested organisations that offer expert advice on SN.

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Disability/social services
10

Guineapigsqueaks · 17/02/2022 21:57

Hello, I don't know where to post this as it's a few topics maybe but will leave it here if that's ok and delete or whatever if I need to put it somewhere else(sorry, new to this but really need some advise). I am mum to my 16 year old daughter and 13 year old son. My son was diagnosed with cystic fibrosis (CF) at birth, cancer at just over a year old and just before Christmas diagnosed with CF related diabetes. He's also needle phobic and despite my pleas for help over the years, we've had nothing from his care team which mainly consists of physchologists, nurses, doctors or play specialists. Being diabetic means the only way to get insulin into him is through needles, whether it's a 3 day lasting port or insulin pen, it sometimes takes a couple of days to inject him. It's resulted in taking him back to hospital and calling an ambulance. Doesn't sound as bad writing it out as opposed to living it, it's absolutely horrific to see the state he gets himself into and knowing that it is me that's making him like it because I inject him, he can't deal with doing it himself, not yet anyway. Long story short ish, my daughter who witnesses these now daily occurrences told her head of sixth form ( I've always kept school up to date with our struggles with this as well as hospital and drs surgery etc) who has phoned social services as a safe guarding issue? My daughter told the great of such form that I have a couple of times now become so frustrated with our daily situation that it's not unusual for me to bang my head with my hands and scream because for the life of me I cannot find a way to help my son tolerate needles. No matter what I try, injecting myself with the 'practise pen' filled with saline (advised to do by sons diabetic nurse) or applying a port to my own stomach or letting my son inject me with the saline filled insulin pen, taking to him about his worries or asking what might help, bribes, I feel I've tried it all and getting nowhere, which is absolutely emotionally draining to do over and over day in day out knowing for the past two months it's got no easier..I mean,it's a phobia for him. We were sent home from hospital struggling, still struggling, and expected to get on with it! Just feel totally let down and annoyed to be honest that nobody so far has helped, despite everyone being aware how bad it is each day, now it's come to school ringing social services. I don't know what to expect? It's fast team in social services who I'm ringing tomorrow. Has anyone had similar experience or can advice me at all please? Thanks for reading x

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Imitatingdory · 18/02/2022 09:56

Don’t worry about social care calling. Has the clinical psychologist not helped with the needle phobia and adjusting to the CFRD?

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KimMumsnet · 18/02/2022 09:58

Morning, OP. We're just giving your thread a bump for you. Hopefully someone will be along with some good advice for you soon.
Flowers

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Guineapigsqueaks · 18/02/2022 11:16

Morning, well he's had three different psychologists over the years. The first one told me I should bribe him with haribo sweets he was just no help whatsoever. This was the same day my son was trying to throw himself out the car on route to hospital (blood test day). The current one referred us to a play specialist who ended up pinning my son down so he'd have insulin injection which cropped up during the time of the appointment. This current psychologist has been a disappointment, she's virtually told me she cant help. I asked if there are any other specialists to help so he referred to the CF adult teams psychologist. Had three sessions with her, two were a one to one just my son and her. Held out a lot of hope with that one but when she called me in on final session she told me there wasn't anything she could do! This was pre diabetes. We attended hospital for each blood test which would have been checking for diabetes amongst other things, but we'd never get to the point of doing the blood test.. Go through all the motions of sit in chair or lay on the bed, sometimes have numbing cream sometimes not, nurse goes to put needle in and he just totally loses it lashing out, screaming, hyperventilating nearly being sick. Feels like his team just gave up. Now we have needles day in day out and still no help which I suppose is partly why we're in this situation now. Feel pretty useless!! We've had zero support with the emotional side of adjusting to this new condition either, it's been pretty awful to be honest. There is a real lack of follow up support, even though I have asked and had call backs from our local gp she just told me there isn't much she can do. Maybe I should be more demanding or maybe it's just how it is.

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Guineapigsqueaks · 18/02/2022 11:17

Sorry for long posts, thankyou both for replying though

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Guineapigsqueaks · 18/02/2022 12:16

Phoned the social worker. He's on his for an informal chat. Should be here soon. On the plus side, sons managed to let me put his port on and it took,amazingly, less than an hour so feeling proud of him. I had to put one on me too though but don't mind if it does help him.

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Imitatingdory · 18/02/2022 12:29

That is poor care from the psychologists, nothing is going to change with a couple of sessions, this is something that needs more intervention especially now there is CFRD to contend with. Have you spoken to the CF trust?

Have you tried a Buzzy? Some find it helpful.

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Guineapigsqueaks · 18/02/2022 15:49

I've been googling, hadn't heard of buzzy but looks good and gets rave reviews so will be trying that. Thankyou :). They use them at GOSH apparently. Decided to change from QMC to Sheffield hospital. Social worker has just been and he told me it was QMC diabetic nurse who made the referral to social services. Feel a bit annoyed because she knew from December how much son was struggling. She told me he was the most challenging patient she'd ever seen in her 20 years of nursing. If the only way of getting help is through SS I don't know why she didn't do it earlier..or I would have .. instead we were waiting endlessly for care team to help!
CF trust gave me some details of charities who might be able to help, I've been in touch and told I would hear back but haven't yet. Will try again though. Social worker agrees hypnotherapy might help and is going to refer to cahms too.

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Imitatingdory · 18/02/2022 21:25

The CF Team’s CP should really be doing more to help. You could try asking for input from liaison psychiatry.

You mention numbing cream (emla cream?) some people find the spray or ametop gel works better.

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Guineapigsqueaks · 08/03/2022 08:36

@Imitatingdory just want to say such a big thankyou for telling me about the Buzzy4shots device. Ordered one, well it's a ladybird version as can't get hold of the bee anywhere but that's besides the point, used it three times so far with a libre change and two port changes and my son can now do these changes in seconds ( after applying buzzy) I think it's safe to say it's a total game changer. Thankyou so so much, I'd never heard of it, had googled things to help but has not seen these ever. We had what is hopefully our last visit to qmc last week, I told the team I'd bought one.. You know what.. They said they have these on site but they never mentioned using one as they didn't think it would work for my son?!?! Couldn't believe it but nothing suprises me with that place these days. Anyway THANKYOU! :) cannot express how grateful I am to your suggestion :) x

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Imitatingdory · 08/03/2022 13:54

Guineapigsqueaks I am so pleased the buzzy worked for DS. I am amazed the CF team didn’t at least try it.

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