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Original poster

Ongoing support thread?

276 replies

SouthWestmom · 04/11/2018 11:59

Shall we have one?

It's so difficult to deal with.

Anyone raising a child or young person with mental health issues who wants to just check in?

OP posts:
fatpord · 21/12/2018 09:09

Hi SWM

I understand what you're saying - it does stick in my gullet - but I'm worried about the long wait even once they agree to see us - we're so desperate I don't think we can cope with another 6 months like this. I've seriously considered dragging him to A&E these past few nights but he says he won't go and gets in more of a state. We've had therapy through the nhs but he didn't get on very well with it. He likes his counsellor now - but I'm sure he needs medication too.

Does yours have medication for OCD?

OhTheRoses · 21/12/2018 13:52

@fatpord please request another referral and write to the mh trust, FAO, chief executive, noting your son's sustems and requesting information about why the threshold was not met. Send registered and copy to your MP. Should do the trick.

Topseyt · 21/12/2018 14:35

It is very stressful, Fatpord. I do agree too though with Ohtheroses. Insist on another referral and write to all and sundry. Your MP could really help here by taking up your case. They carry a fair bit of clout when they choose to use it.

Regarding A & E, CAMHS stock advice if you encounter a crisis whilst in-between appointments with them seems to be "go to A & E. I almost did it one night a couple of weeks ago with DD, but she freaked out about it, saying that she was neither an accident nor an emergency. She also thought that we would almost certainly be kept aside waiting for hours and then just sent home in the middle of the night. Probably correct there, unfortunately.

I think it is CAMHS covering their own arses really, especially when you have called their out of hours number.

It all sucks.

Original poster
SouthWestmom · 21/12/2018 15:03

Does your CAMHS have a duty team? Do you could get advice and 'permission' for a and e?

Mine refuses medication and I'm very scared he is heading for hospital. It's awful. Pockets of pretend normality while nothing is scary and then straight into something crazy.

I'm so sorry, but at least speaking seems helpful (to me anyway) with you lot.

OP posts:
OhTheRoses · 21/12/2018 16:30

A&E
When dd had a psych and was recovering and far far better than 9 months before when CAMHS refused to help her, she took 11 antihistamine due to exam pressure. 48 hours later because she was worried she might have harmed herself she went to A&E for reassurance.

A&E dealt with this as attempted suicide did not telephone me for four hours and meanwhile got her to agree to an overnight admission with a 1:1 mh nurse which was a complete violation of the Mental Capacity Act and the MH Act. This was to facilitate an emergency CAMHS review the folliwing morning. £936 it would have cost and CAMHS doesn't have resources for early intervention.

She was assessed in A&E by the psych liaison nurse because she was over 16 and could be which was established once I arrived. We left that night and saw CAMHS three days later, they offered counselling to start within in few weeks. It then wasn't going to materialise for 12 weeks. I raised merry hell. On 7 Aug it was impossible to provide it sooner. On 8 Aug MP got back from his holiday. Counselling started on 10th Aug.

The system is an ass and parents have to advocate very hard for support.

fatpord · 22/12/2018 02:01

Just spent the night at A&E. Ds so bad tonight. Rang 111 and they told me to get to RUH Bath asap. So we did. Apparently though CAMHS don't cover Bath out of hours as we live in Bristol (outskirts) (so we were sent to Bath why?) and 'the best' they could do was to give him some Diazepam which has made him slightly more laid back but still doing his rituals. The system is a fucking joke. Excuse my French but I've had enough.

OhTheRoses · 22/12/2018 07:48

Oh you poor thing fatpord. I know this doesn't sound helpful at present but might it be worth going to Bristol today which CAMHS supposedly does cover?

OhTheRoses · 22/12/2018 07:55

www.impactpathways.org.uk

Gives your lical CAMHS details and a link within this gives numbers to call for over 16s facing a mh crisis.

I hope you get some reasonable advice today and pointed towards support.

fatpord · 22/12/2018 08:14

I’m stood outside the doctors waiting for them to open. Despite having diazepam last night he was up all night. Finally went to sleep at 7am. Spoke to a helpline and they said don’t wake him so I’m up here without him. Going to try to cause Merry hell but not sure I’ve got the energy. Thanks for the info ohtheroses really appreciate it

OhTheRoses · 22/12/2018 08:18

Well it's good your GP actually opens on a Saturday. Good luck.

Original poster
SouthWestmom · 22/12/2018 09:40

Fatpord what a total nightmare, all that energy and time and they can't assess. Is she over 16? I second finding the crisis helplines for your area.

OP posts:
OhTheRoses · 22/12/2018 10:09

I don't know if I've mentioned this already but Relate are now providing adolescent counselling. I found out when CAMHS let us down and the psych's private counsellors were booked over the school hols due to not booking because CAMHS had said they would provide in that timeframe.

Relate were excellent - (appreciate it's a personal thing) but much better than the £110ph people attached to the private hospital and much much better than the CAMHS counselling. They charged us £30 having been told money was not an issue. What also was invaluable was that dd saw the counsellor 5/6 times and it was then easy to book a couple of sessions when she needed them on an adhoc basis and that was invaluable.

DD got a diagnosis through her psychiatrist who also recommended beta blockers and fluoxetine which were prescribed by the GP with psych reviews in background. DD had ADHD/ADD never picked up and led to anxiety/depression/self harming during her GCSE year.

To reassure, with a diagnosis and support she has recovered and manages her anxiety and adhd very maturely and independently. We have come a long way since the height of cutting and tablets and she has been "clean" for nearly two years.

I think it helps to bear in mind that things can get better when you are in the eye of the storm.

Be kind to yourself fatpord. You are advocating for your cub and being a fantastic mother. Flowers

fatpord · 22/12/2018 12:20

.Thanks SWm yes he's 17. Ohtheroses sent me a link to the emergency helplines above - thanks ohtheroses. We've been on the phone to Blackberry Hill this morning and they advised to let him sleep while he can and take him to A&E in Bristol this afternoon or whenever he wakes as Bristol do have a out of hours service. Doctor wouldn't see me without him and they don't do home visits on the weekend so A&E is what we'll do I expect. The helpline said that it is common for OCD to suddenly flare up and calm back down again - so I'm holding on to that and nice to hear that others have had some success. Ohtheroses did yours have her psychiatrist assessment through CAMHS? SWm is your son taking his medication now?

Original poster
SouthWestmom · 22/12/2018 12:42

No he won't and has always said no. Awful last night, without going into detail, but I can't see a way out without him being admitted now

OP posts:
OhTheRoses · 22/12/2018 12:51

No, it was private I'm afraid but I have made a lot of noise locally about the inadequacy of the service and have learnt a lot about how to deal with them and to makes sure they don't let loved ones slip through the net.

Never leave an assessment of hospiatl without an agreed action plan and make sure it's SMART.

Specific
Measurable
Agreed
Realistic (for your child not their 9-5 excuses)
Time bound

"This is what I want disseminated to the multi-disciplinary team" in writing. "Who leads the multi-disciplinary team".

OhTheRoses · 22/12/2018 12:53

Assessment or hospital. Sorry on phone.

FlowersFlowers

fatpord · 22/12/2018 13:07

SouthWestmom what does his psychiatrist or therapist say about him not taking them? I know you can't force him. It sounds so desperate for you. Do you have support at home?

fatpord · 22/12/2018 13:11

Ohtheroses - is the contact with the psychiatrist continual? We can just about afford the initial assessment but if we have to have continual follow ups we are going to struggle with that. Can I hope for a one-off assessment with recommendation for medication and back to the GP from then on?

OhTheRoses · 22/12/2018 13:33

In our experience fatpord the GP prescribed against a backgroud of regular reviews. DD saw the psych pretty regularly after the assessment and it took 6 months to get dd stable enough for ASD and ADHD assessments. She did miss a year of 6th form. I am afraid we probably spent about £6k altogether. With hindsight I think a bank loan would have been worth it if we hadn't had the money. Probably not what you want to hear.

I would not let CAMHS think you have any money at all.

fatpord · 22/12/2018 13:51

Oh no definitely not what I was hoping to hear but at least I know now thanks Ohtheroses. I think I'm going to have to hold out for a CAMHS assessment. I'll try all your advice and make as much noise as possible but it shouldn't be like that should it? Not looking forward to Christmas one bit

OhTheRoses · 22/12/2018 13:54

No it shouldn't be like it. Your money might be best spent on supplemental therapy and feel good things that soothe. For you too because you must be kind to yourself.

fatpord · 22/12/2018 14:25

Sleep is all I want for Christmas...……………..
Yes I think you might be right- his psychologist costs £80/week - he's really taken to her unlike the nhs/off the record ones so worth every penny just a shame there aren't more pennies about!
Do any of you use the charities for support locally? I've never been one for support groups etc but I've found this one so helpful just to know we're not alone. Possible being over-optimist that I'll ever have the time or energy to meet up with others

Original poster
SouthWestmom · 22/12/2018 14:28

We did have a one off booked which we cancelled as CAMHS moved it all forward.

OP posts:
OhTheRoses · 22/12/2018 14:31

To be fair, one of the reasons I've made such a noise about this locally is because I can without it impacting dd's care. I can ask at a CCG public meeting if the GP's at the table would find standards adequate for their own children and how they can sleep at night when in 2014/15 the CCG refused to pay its CAMHS levy.

Parsley65 · 22/12/2018 16:54

Hi.

Another desperate Mum here!

My DD is 15 and on AD's (citalopram) since April for depression & anxiety. She has been seeing CAMHS too on a weekly basis and this has been very good for her. Before starting the meds she would go into school, but not attend class. This went on for weeks/months and she has her GCSE's this year and has missed masses. At the moment she goes to most lessons, but finds it so draining she can't do any homework or begin to tackle the mountain of catch up has - and this is causing more high anxiety. It's a vicious circle. I would say forget the academic side - it's too much for you at the moment, but she has set her heart on a career in MH and this involves good grades and going to uni.

Really sorry to hear so many sad stories on here and hope we can support each other x