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smileymum

Hi all

Just thought I'd start a thread on this in case it is useful.

What good support have you had from CAMHS? What would you like them to do? If you can, perhaps state your location . In that way, if you are not being offered something locally, you can take it back to your local CAMHS and suggest it, saying it is offered in xxxxxx Who knows, maybe they'll start talking to each other and sharing good practice?

I'll kick off: Exeter CAMHS offer a 2 hour parent support group 1 evening a month for 2 hours. It is led by a family ED therapist. Short talk (last night on FBT) followed by group input and time to chat and share with other families. They are also thinking about running a multi-family intensive 4 day programme and wanted feedback on whether this is something we'd value.

However, while my daughter is receiving indiviudal support, I would like some parental support (probably without my daughter) as we are getting no other ED input. For some reason, they seem reluctant to provide. Curious about whether others are getting parental support from CAMHS. Thanks everyone!

Smileymum
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runmum
Hi smileymum,

I don't know who is responsible for supporting parents. It doesn't seem to be in CAMHS's remit, but isn't in anyone else's either. I have ended up with depression, on medication, and didn't know where to turn for help. I have private health insurance through my job, so have been seeing a private psychologist. My GP referred me to NHS services 8 months ago but still nothing.

It is right that, if parents can, they take on caring for their child through the illness as much as possible, but it would be nice for someone to acknowledge how hard it is, and have someone looking out for our mental health too.

By the way, I am in Wales.

All the best xx
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smileymum

Hi Runmum

Sorry to hear what a tough journey you've had with no support from CAMHS or anything else on the NHS. This journey really takes its toll but I do hope the sessions with the private psychologist are helping you...

Since families are so tied in to helping, it seems crazy not to support the parents in their fight.

Also, and perhaps I've read the NICE guidelines wrong, but it seems a component of what should be offered is family therapy both with the child and without the child:

https://www.nice.org.uk/guidance/ng69/chapter/Recommendations#treating-anorexia-nervosa see 1.3.10

I will do all I need to but I'm going to keep asking in order to get all the support I can along the way...

Thanks for your best wishes - and for you, too. Wishing you all the strength and compassion you need. x

Smileymum
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cjac16
We are in Maidenhead Berkshire but we have now moved on to adult services (d now 18) but I can honestly say that for us CAMHS were useless.  To start with there was no consistency with the staff - think my d had six people she was seeing at one time or another.  The consultant, family therapist and her individual therapist all left for pastures new which was not good for us.  I remember one therapist actually saying to my d at the end of a session "shall we have no sicky sicky this week" referring to her purging to which my d just laughed.  Talking to my d the other day about CAMHS, she said she just let them believe that what they were doing was helping her. It was not until she became a day patient at the local ED clinic as a young adult that actually felt she was getting help.  I do believe that in the past year that CAMHS now has a dedicated ED department and I hope it is better organised than when we were with them.
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teecee
We are in West Yorkshire and our local CAMHS offered a 6 week rolling support program for parents (2 hours) run by 2 x family therapists to provide different info each week re FBT/ED treatments plus the time to speak with other parents and share good practice.
I would have liked them to offer some sort of online service where you could update them in real time as to what was occurring in the home prior to meeting professionals so that they were all ‘in the know.’ My D was also seeing a number of different professionals and whilst I know they had a weekly meeting to get themselves up to speed I felt like it depended on who you spoke with as to how much detail was passed to the rest of the team. My brain was fudge and often I would forget to mention something which may have been important but as you know things can move quickly when dealing with ED.
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O2relax
Such a disparity in support, I don’t feel we have anything in Adelaide, Australia. After two weeks inpatient for low heart rate only CAMHS support is a psychiatrist who claims he is only there to ‘monitor’ the impact of meds eg olanzapeone, fluoxetine. She has seen him 5 times since May. The hospital referrred is to a private fbt specialist that costs $230 a visit (we do get some back on rebate) all that service does is weigh her and tell us to up the intake . I feel like we have zero suppport just them pushing it all back on the patents. Thanks to all at this site I check in daily for your support!
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mrh74
Great thread, thank you for starting it!

We are in Hertfordshire and we are very lucky to have had fantastic support from the Herts CAMHS ED team for two years.  The support offered seems to vary from family to family depending on each family's needs but my daughter saw an ED nurse weekly for 4 months then fortnightly once she was weight restored.  She relapsed 4 months later and then started seeing one of the family therapists alongside the ED nurse. 

The treatment she has received has been textbook FBT, following the phases and moving backwards and forwards through them when she encountered difficulties.  They have been so kind to her but absolutely firm on food.  The ED was triggered by long-standing anxiety and having been bullied at primary school and they found that FBT alone wasn't working so they started psychological therapy early, alongside the FBT.  Although she couldn't engage fully this approach has worked and they were very patient, trying many different approaches to help her to express and address her anxiety.  For example, she would only wear age 11 baggy clothes (she was 13 at this point) so her nurse even came to the house and helped her to throw out the triggering clothes and choose more age appropriate items.  She has been weight restored for 5 months now, has moved to monthly appointments and is so much more confident and relaxed than she has been for years; there are still traces of anorexia but I thought we would never get even to this point!

In terms of support for parents the team ran a 2 day carers' course which was very helpful and they give out information packs when you are first referred.  I have always been able to text her nurse separately but we didn't see anyone without our daughter until about 8 months ago, when I broke down in a session and they realised that we were finding things difficult.  Since then my husband and I have seen the therapist and nurse on our own approximately once a month and this has been absolutely invaluable.  We need to be completely confident in front of our daughter so these sessions gave us the space to express our deepest fears and seek advice on how to handle specific issues.  We have been able to give them information which they can then use in sessions with our daughter, for example, the clothes issue, body checking, self harming, which she would not have told them herself.  I agree that this should absolutely be an integral part of FBT because on a day to day basis it's the carers who are doing the ground work.  I would have liked a regular carers group like smileymum had as I felt very isolated for a long time - but thank you to this site, which helped even though I didn't have the confidence to post much!

The big issue in Hertfordshire, as it seems to be pretty much everywhere, is access to the service in the first place.  My daughter was referred to Step 2 (early intervention MH service) in January 2016, was assessed in May 2016, put on a waiting list, things worsened, referred to CAMHS in June 2016.  An emerging ED was identified, she had severe anxiety about body image and clothes being tight but had not lost weight.  CAMHS referred her to the ED service who said they couldn't see her as she wasn't underweight enough but that CAMHS should treat her instead.  She was put on the CAMHS waiting list as high priority and never came off it.  In October 2016 we realised that she had grown and lost weight so CAMHS did another referral to the ED team, she was assessed within a week and seen immediately but that was because she was significantly underweight at this point.  I am now terrified of being discharged in case she relapses in the future and we can't get back into the system!

Sorry for the long post - I am making up for 2.5 years of lurking!



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smileymum
Thank you for all the great replies and wow, such a discrepency re: service and help. 

O2relax - sounds like a nightmare: having to pay for only the barest 'support' and I use that term very loosely. I'm sorry you've had to endure all of this with pretty much zero help. I agree - I've learned more on this forum than I have from IP or CAMHS. 

teecee - what a good idea  - something online and that can be updated in real time. A little bit of technology could expedite some things and help free-flow of information between team and parents. When my daughter was in IP and miles away, they managed family therapy sessions with just me via Skype so innovative and time-saving solutions can be found. We've put a man on the moon etc....Everything about CAMHS seems very low-tech and labour intensive. It doesn't always need to be, I'm sure.


cjac16 - can't believe how useless CAMHS were. I believe NHS England have tightened guidelines for ED treatment which should make everyone's experience much better than it was, at least (though no consolation to you) and I am so glad your d found the help she needed at the adult ED clinic. It's not often you hear adult MH treatment is superior to children's services.

mrh74 - thanks for posting (and I'm glad it was a long post as that level of detail is so helpful) and I'm so heartened to read about your largely positive experience. It sounds like you had just what we are all after: evidence based therapy which was flexible and responsive enough to respond to the needs of the individual family. I'm so glad to read how your daughter is so much better although of course I understand the relapse fear. If it is OK with you, I'm going to quote bits of your experience to our CAMHS

Our CAMHS have a patient liaison worker who apparently feeds back ideas for improvements to CAMHS. If anyone has the energy to look into whether this is available in their area and wants to feedback any ideas for improvements for their ED service, I'd encourage you to do so. I'm going to feed back some of the ideas on this thread and other thoughts I've had. When I'm not knackered and anxious about our own situation, I do want to try and leave the support services in a better place than I found them, as much as I am able. No pressure, anyone.....just something to think about.

Best wishes to you all for now xxx



Smileymum
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mrh74
smileymum, absolutely, please quote away!  I'm going to a conference this afternoon showcasing all of the Wellbeing services in Herts for children and young people and I am going to give feedback to Step 2 and general CAMHS on the damage their waiting times are doing, if I can...
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Cat_can
runmum wrote:
Hi smileymum,

I don't know who is responsible for supporting parents. It doesn't seem to be in CAMHS's remit, but isn't in anyone else's either. I have ended up with depression, on medication, and didn't know where to turn for help. I have private health insurance through my job, so have been seeing a private psychologist. My GP referred me to NHS services 8 months ago but still nothing.

It is right that, if parents can, they take on caring for their child through the illness as much as possible, but it would be nice for someone to acknowledge how hard it is, and have someone looking out for our mental health too.

By the way, I am in Wales.

All the best xx



Yes!!!! It’s just damned hard and I feel so alone
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smileymum

Cat_can


Heart goes out to you. It is so tough and so isolating - nobody really gets it unless they've been through it and when they absolutely refuse and the 'regular recommended treatment' doesn't seem to work, it is terrifying. Psych support for parents through the process should be mandatory. 

Here I have had to push to the point of shouting for CAMHS to offer some ED input for family sessions without daughter. Quoted NICE guidelines and their own pathway and threatened to take it further if they refused. I am not sure how helpful they will be but they have agreed  at least. It certainly sounds like you could do with a whole lot more support than you are getting - horrible to have to fight for it but I hope you are able to demand and get what you need locally.

I know you've posted on another thread and I hope you find some wise support and ideas. There are some amazing parents and carers on this site who have used different ways to support their kids through. I am sure you will, too. With very best wishes to you for now. x

Smileymum
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