Referral not happening

[Mrsmoo]

Hi,

Today I had a phone appointment to discuss the referral letter the doctor had sent for my daughter.

i was asked to explain all that has been going on with her so I described her thoughts of going to bed with people, her need to confess every wrong she has ever done, her worries over bad thoughts of people she thinks are ugly or fat, her constant hand washing which has also now developed into constant questioning herself if she needs the loo and the fact that she thinks the only way it will stop is by her dying.

I have been told that it may just be anxiety and that I need her to go through school first which is an ELSA programme, I think this involves making a book about things that worry you and things that make you safe, that sort of thing, if this doesn't help school can then refer to nurse and if she can't help she can the refer back to camps.  I have been told they don't know when we will get on the ELSA support and as my daughter is not showing any signs of issues at school they are not going to push it.  

I don't know if this is the right thing to do or if I need to look at other options, no one is particularly keen to help, I know the system is stretched massively but everything tells you to get help quickly but where from?  There are no private therapists in my area that do CBT for children.

I have held everything together since this started with little support from my ex husband who thinks it's just a stage or hormones but was so annoyed to find myself breaking down to a complete stranger on the end of a phone who says it sounds as though my daughter just wants it to stop and isn't thinking of harming herself, how she knows this is beyond me because at the moment I have no idea what is going through her mind and no idea how to make it stop.  I just want to help her!

Any advise?

Thanks

[Ashley]

6 minutes ago, Mrsmoo said:

I have been told that it may just be anxiety and that I need her to go through school first which is an ELSA programme

Was it the GP that said this?  I am hearing this more and more and I have spoken to mental health professionals who work with children and they also believe this is highly inappropriate for a number of reasons.

My advice would be to go back to the GP and demand a referral to CAMHS.  If the GP refuses again ask about complaints procedures.   If you want and can tell me exactly which area of the UK and town I can contact the mental health trust tomorrow to double check what is going on and why children are being denied, and clarify if this is indeed the appropriate process.

There are three immediate glaring problems. 

1 - School teaching assistants within ELSA are not medically trained to diagnose OCD or not.

2 - Family may not want school to know about the mental health problems.

3 - What happens when school is away for the summer?

[Mrsmoo]

I had a referral to Camhs but instead received a letter from the access coordinator for camhs saying they didn't feel that a specialist mental health service would be the most helpful service at this time but they would give me a phone appointment to assess needs and it was this appointment today that I was told to wait and go through school first, so as such have been refused by camhs.

The referral letter sent by the doctor made me sound like a neurotic parent by stating more than once that I had researched on the internet and not mentioning any of the issues I stated above, the gp also said that my daughter presented as engaging and able to communicate well, which is laughable as she cried throughout the whole appointment and never spoke.

i have started some anxiety self help books at home and have another list from the camhs phone call today.

[Ashley]

That sounds appalling and inaccurate. I would push them to give an appointment with CAMHS for assessment.

I am not for one minute suggesting you are neurotic parent, but let's assume you are. Somebody somewhere still needs to do an assessment to ascertain that. From what you wrote, you have written enough to make me suspect OCD so they need to be accessing that. 

[Mrsmoo]

I presume the phone conversation was the assessment and as yet she is not convinced it is ocd.

To honest I am unsure how to fight it, I also asked the gp about referral to Bath University as that is local but she had to request funding for it and I have not been told anything more. It is my daughters birthday this week so we are going to concentrate on that this week and then I am going to try and find out what is happening with Bath referral.

other than that I don't know what to do.

[Ashley]

I don't think you would be able to get a referral to the Bath University service until local CAMHS services have been explored, which of course puts you in this loop.   The phone conversation can't have been an assessment if they didn't speak to the patient (daughter) directly.   I really don't believe the access co-ordinator  can say if something is OCD or not with any level of certainty without talking to your daughter, so to dismiss it for just anxiety is wrong.

If you can tell me which CAMHS service it is I can call them and have a conversation with them about how a parent arranges a CAMHS assessment, (I wouldn't mention any names (not that I have your name anyway). 

[Mrsmoo]

On 02/08/2017 at 12:39, Ashley said:

I don't think you would be able to get a referral to the Bath University service until local CAMHS services have been explored, which of course puts you in this loop.   The phone conversation can't have been an assessment if they didn't speak to the patient (daughter) directly.   I really don't believe the access co-ordinator  can say if something is OCD or not with any level of certainty without talking to your daughter, so to dismiss it for just anxiety is wrong.

If you can tell me which CAMHS service it is I can call them and have a conversation with them about how a parent arranges a CAMHS assessment, (I wouldn't mention any names (not that I have your name anyway). 

Thanks, I appreciate the help.

The letter I received was NHS Oxford Health, Community Child & Adolescent Mental Health Service, Melksham Hospital, Spa Rd, Melksham, Wiltshire. - 01865 903777.

[Ashley]

Thanks for this.

I did have a conversation with the administrator who was quite helpful in explaining the process. She was not clinical so was unable to explain the clinical process for referrals for OCD and anxiety so she asked a clinical person to call me back (may be Monday now).

At the moment I am just talking generically to them about the referral process.  If you wanted me to reference your case and ask them to review I can, but I would need to know your daughter and your details if you wanted to, could you email names, address and date of birth of daughter to ashley @ ocduk.org(without spaces)

Ashley

 

[Mrsmoo]

Can I wait and see what they say about the process first and go from there.

thank you for your help it is a relief to know someone wants to actually help.

[Ashley]

Of course, they are emailing me their referral process form which they think will be helpful for me to review.

[Mrsmoo]

Thank you, I just want to know that I am doing all I can for my daughter.

[Mrsmoo]

19 hours ago, Ashley said:

Of course, they are emailing me their referral process form which they think will be helpful for me to review.

I have a copy of the referral form the gp filled in and there were sections on there for me to fill in and my daughter to fill in but we were not given the opportunity.

[Mrsmoo]

On 04/08/2017 at 13:26, Ashley said:

I did have a conversation with the administrator who was quite helpful in explaining the process. She was not clinical so was unable to explain the clinical process for referrals for OCD and anxiety so she asked a clinical person to call me back (may be Monday now)

Hi, just wondered if anyone got back to you.

[Ashley]

They promised to email me something but never did, I will go through my inbox in case it crept into my junk folder. 

[Mrsmoo]

Thank you, I received my copy of the letter saying they want us to go through school first and with a list of books to try.

it feels as if they are expecting you to use self help books rather than them. We have done a book about coping with worries and it has helped a little and I also have a nook on ocd to try but I do worry that I may be making things worse.

I know school will not refer because they do not see any issues any my daughter has already said she doesn't want to talk to any of them because they know her and she doesn't want her friends asking why she is going off in class time.

[Ashley]

On ‎16‎/‎08‎/‎2017 at 08:28, Mrsmoo said:

Thank you, I received my copy of the letter saying they want us to go through school first and with a list of books to try.

Sorry I found the email they sent me with their referral process, which makes no sense.... it claims 

‘A first line intervention should have taken place prior to a referral to CAMHS. E.g. school counselling, health visitor or school nurse.’

So I have asked them to clarify if this is a national CMAHS directive or their own pathway.  I also emailed a professor who is an expert in children's mental health and she told me..

Quote

There is no evidence based psychological intervention for OCD other than CBT.  this is not something it's possible to be delivered in schools and schools and other first line services are not qualified to diagnose OCD so could not identify it anyway. 

Also ask them how the school nurse, counsellor or health visitor would know if they had a child with OCD in front of them.   And what exactly would they offer?

I know in your case the telephone assessment with CAMHS disputed OCD, which is part of the issue, but that was an assessment with you not your daughter.   I really think what you have been told is inappropriate on many levels (which I will follow up with them generically) but in your case I think there are two options.

1 - Speak to your GP about referring you to a neighbour CAMHS in another area using your 'right to choose treatment provider' (means travelling out of your catchment area). Hopefully another CAMHS run by another mental health trust will be better! 

2 - Stay local and fight them to at least see your daughter for a face-to-face assessment. To do this I would ask your GP to write to the CAMHS again insisting they see her for the assessment.

If it is OCD then the NICE guidelines make no reference to working with schools.  Obviously they claim it is anxiety, so I need to check what the NICE guidelines say for anxiety in children.... but the point is the diagnosis is in dispute, so that being the case that needs CAMHS not school!  Ideally your GP can put something like that in the letter to them.

Shout if you need me to do anything. Ashley. 

[Mrsmoo]

She states in her letter that the sysmptoms could be ocd but she would like to explore anxiety first.

We have worked through a recommended book for anxiety with techniques to stop worrying thoughts and I will admit that things have improved, is there a chance we can get through this on our own using these books?

 

[Ashley]

43 minutes ago, Mrsmoo said:

She states in her letter that the sysmptoms could be ocd but she would like to explore anxiety first.

Sounds to me like she doesn't have a clue.  OCD is an anxiety disorder, so there will be anxiety with OCD... the point being the OCD will be causing severe anxiety. 

There is always a chance that books can help, but if it is OCD most people need more intervention.  

[Mrsmoo]

Thank you or your help.

I am just struggling with it all at the moment, I work 2 jobs at the school so fighting with them is not in my best interest and to be fair they do not see any problems so it would be hard for them to pass this on. I am also presently living at my parents helping as my mum has Parkinson's and Parkinson's dementia.  I am going to try and make an appointment to see my own gp as it was a different one who referred in the first place but this is no easy task as appointments are like gold dust.  I know they applied for funding for Bath uni so I can at least see what has happened there.  I will let you know when I hear any more.

Thank you, just having someone listen has helped me which in turn helps my daughter