Daugher very down/axious and no help from NHS/CMAHS

[Timkk]

Dear Group,
I'm pretty desparate now. Our daugher was diagnosed on the ASD and she has been really suffering with axiety and depression for about 4 years now. She stopped going to school and some days just can't get out of bed at all. We have been desparate for help via the GP and CMAHS but we are getting nowhere. Just constant waiting and form filling but haven't even seen a doctor in all this time. Our daugher refuses to speak to anyone except possibly a doctor and we have asked for some medication to try to break the cycle but no help at all so far.

I would pay for a private consultation but again this doesn't seem available. There are loads of websites and helplines but nobody seems properly qualified to help and we have tried all the advice on them e.g. routine, etc.

We are absolutely desparate, she has no education and is missing out. We are a loving family but it is causing a lot of stress.

PLEASE can anyone help us find a doctor or someone qualified to help??? If this was a physical injury she would not have waited 3-4 years!

I know DD said she would only see a doctor, but if you found a counsellor/psychologist privately that she clicked with, would that work/help? Most psychologists have the Dr title now.

Thanks for you quick reply Sponge

We have tried two councellors. The first one she would not talk to. Just sat there with her head down and did not engage. The second she agreed to see but it just causes a lot of axiety on the day and she just shuts down and can't get out of bed.

I realise it sounds a bit lame but we are not parents who are soft and giving up. This is a real disability but when she can't engage it is very hard to fix which is why we though maybe taking some medicine might break the cycle. Unfortuantely, we can't get the NHS to do anything along these lines. Are there any doctors out there who can help prescribe somthing?

There are apps and services where you can speak to someone online which she might be able to try if she felt more comfortable 'texting' with someone rather than in person.
My daughter did counselling online via Zoom. This was during Covid but I bet some psychotherapists would offer this for people who would prefer that.

Thanks yes have seen/tried some apps. They are generally things like motivational advice and keeping a diary of your feelings. Maybe that is all you can do but I do feel like we have reached the stage (long ago) where we need a qualified doctor to help. I'm very worried she will do something daft and hurt herself.

This is so awful. The lack of services for our young people is a bloody outrage.

I experienced this with my own DD and took her out of school because she was suicidal.

Spending time outside really helped. Going for a nice drive. Going to see a bluebell wood. Anything that involved seeing things that didn't need to be talked about. Animals in the zoo. Trees, flowers. Ducks on a pond. A stupid film at the cinema. Some days she wouldn't come out of her room, so I would take her a tray. Keep her room really tidy for her. Anything at all to let her know that I was there and it was ok for her to be feeling the way she felt, and that she was loved.

It was a long road, but she's much better now. I wish I had taken her out of school sooner.

You might have to have her treated privately if you want further assistance. Do you have a private GP locally you can consult with?

(I could get any help through the NHS.)

I’m in a similar situation. My daughter self harms badly and has had 3 suicide attempts. She also suffers with anxiety. Apart from a few sessions after each suicide attempt she gets no supports from CAMHS. We just can’t afford private counselling :(

How old is your DD? GP’s are not allowed to prescribe antidepressants to patients under 18. It has to come from a consultant/psychiatrist. I would go private to get your daughter some medication, depending on how old she is. Then hopefully when she’s feeling a little better she will engage with therapy/counselling.

DD (17) was suffering with crippling anxiety that was preventing her from recovering from an ED when she was 15. She was prescribed fluoxetine and it really did help in a way that nothing else did. She is still anxious (her personality type) but she can manage it. She was also seeing a psychotherapist weekly but that has dropped down to monthly now as she is in a much better place.

When my Dd was self harming we had Bupa.

I went on the Bupa website and found a psychiatrist. My Dd went to see her and she prescribed antidepressants and recommended a therapist.

Although this was paid for by Bupa, at the time, a change of jobs meant we were no longer Bupa covered, but the therapist did see her once or twice which we paid for.

I recommend the Bupa website as it allows you to find a professional by qualifications, locations etc. I’m pretty sure if you are paying you don’t need to be a member of Bupa, but it’s a good place to find professionals.

You need a psychiatrist to start off as they are the ones who can prescribe antidepressants.

Best of luck, it’s a horrible situation to be in.

It’s not that she won’t talk, it’s that she can’t. It’s situational mutism, and it makes my blood boil when kids with real problems won’t ‘talk’ The onus is on the counsellor to find ways round it. My dd is like this.

What helped? Online zoom with counsellor, me talking to counsellor and then to daughter sat with me. She then progressed to using the chat bar.

Wonderful young woman counsellor made a break through. She asked Dd to write everything down. So she asked questions and Dd wrote answers. By session 4 Dd was talking to her.

Selective mutism is in here and is vastly undiagnosed. https://www.autisticgirlsnetwork.org/keeping-it-all-inside.pdf?fbclid=IwAR0iNi_UUTs3p80-wNJa57MoGdskLcDnJWDTXAmh1F9zi4QTOvHEb4EGt54

Unfortunately CAMHS is not fit for purpose in most areas as they are completely swamped with waiting lists as long as your arm and very little resources once you do get seen. In our area the ED service had seen a 900% increase in patients being diagnosed (due to lockdown). As a result they had to cut their outpatient program from 35 weeks to just 6! DD was not even weight restored before they discharged her. The only good thing was that she had access to a psychiatrist and I fought tooth and nail to get DD what she needed.

If you can afford to, I really would go private to get your DD seen, it will be well worth the money!

What are your working and family circumstances. Can you home ed whilst she is out of school could you slowly encourage her out of the house. Physical activity is a huge help to anxiety and depression. Could you do a walk a day then a walk and a swim then a walk and a swim and some shopping. Yes she should be at school but if slowly and surely she gets herself out of bed and exercising she will be more naturally tired at night. Sleep better and feel better also her diet make it the best you can depending on how she eats. Take back control of the things you can affect and then chase. Chase CAHMS chase everyone be that person who calls and emails and bothers people. It will get you somewhere complain as much as you can. My son hated school he is ASD eventually went to a SN college he now works and drives. He has hobbies no real friends as such but he is busy and when he is busy he doesnt have time to be anxious. Actually that's a lie he is still anxious but he has learned to deal with it and still motivate himself to be part of society and not to hide away.

Have you tried less direct therapies that don’t rely so much on verbal communication. Depending on DD’s interests something like animal assisted therapy?

Does DD have an EHCP? If so, therapies (not just MH therapies but OT and SALT which will help with her ASD) can be included in there even when DC wouldn’t normally be able to receive them via the NHS and without the need to sit on the normal waiting lists. Ask for an early review of the EHCP. If DD doesn’t have an EHCP you should request an EHCNA - IPSEA have a model letter on their website.

If DD can’t attend school and she is CSA the LA must provide education. Email the LA’s Director of Children’s Services informing them of the situation and requesting provision under s.19 if the Education Act 1996. If that doesn’t work email again reminding them of their duty and threatening judicial review. Then if that fails contact SOSSEN for help with a pre-action letter.

The missing link here is a child Psychiatrist as one PP has said with respect to Bupa above.
These doctors can assess, diagnose, prescribe and monitor your daughter and refer to private therapy.
Hopefully she will feel better very soon xx

To be completely honest I don’t think that you will get anywhere with CAMHS fast, as other posters have said- they are snowed under.

I wonder if it might be worth considering in depth what it is exactly your daughter or you want.

You say very clearly that you / your daughter are only open to seeing a medical doctor. A medical doctor will assess and may / may not prescribe medication, depending on their assessment. If you want medication to be considered then you probably need to be super upfront with any doctors you see and be clear that the conventional talking therapies you have so far tried have not been successful and you want them to consider prescribing. Be really clear about exactly why symptoms you would hope would be reduced with the medication.

Making a clear “problem list” of all the symptoms and things that are an issue or need addressing can be helpful in guiding you for what you might need. Then make a strengths list. You and your daughter can decide together what issues need addressing or what strengths can be increased. Maybe even set some small
goals Around them Depending on what comes out of that - this might direct you the type of professional you might need or online resources or books or activities.

it sounds like there is a lot going on and the way the NHS is set up is to deal with separate, single problems rather than complex people with mulitifaceted needs.

Im sorry that you are struggling, my comments are just suggestions - so please only take them on board if they feel right.

Thanks everyone all these comments are very helpful.

It is so incredibly difficult getting support. We are lucky enough to have CAMHS on board and ds2 is educated at home through the hospital education service. It was really hard to get this and we are still fighting for more support.

Prior to CAHMS we had support from a local charity and there are other local organisations that offer support. It might be worth asking your GP or school SENDCo if they can recommend any.

Our school recently had a well-being event with different providers who offer support. I have attached one of the handouts

Thanks again for all your posts. I've had a small bit of progress with CAMHS since first posting and also followed up a lot of your suggestions.

I sometimes wonder why CAHMS even exist. They do nothing at all for anxious teens.

My Dd was discharged despite refusing to go to school, and l told them this.

My gp was appalled.

My son was accepted into camhs and we were told we would have to wait up to 2 years to see a Dr.
We have paid to see a private psychiatrist, and my son is now on medication. I think you may need to look into private help and compare reviews and costs.

I'm echoing some other posters on here. My daughter was diagnosed with depression and anxiety in Dec last year and stopped going to sixth form - slightly different situation for my daughter (she was reacting to a traumatic event after her father took his own life just before her GCSEs last year) but the diagnosis is the same.

She had counselling and that helped a little after his death but a few months on it became too much for her to handle and seemed to get worse, not better - we did go to the GP in Sept which we both knew was a pointless exercise as CAMHs has a huge waiting list and also it seems very hit and miss whether you get someone who connects with your child and can help.

She was unable to go to school mostly because the anxiety was crippling her - she has never self harmed but expressed suicidal ideation as she felt so bad and said she couldn't cope with feeling like this much longer - in the end she said that she felt it was only medication that would help her cope. I agreed with her - I felt that a psychiatrist who could prescribe medication was the logical answer as did my friends and family.

I did my own research and found a private psychiatrist specialising in teens/adolescents MH. I'm not going to lie, the first (2 hour) consultation was shockingly expensive but the was wonderful and at the end of it my daughter was prescribed Sertraline and Circadin (Melatonin to help her sleep as this was becoming a big issue and lack of sleep was of course adding to her anxiety and depression) I'm not rich - my mum helped and I shoved the rest on a credit card. We saw the psychiatrist several more times but my daughter doesn't feel the need to see her at the moment but we can book in with her any time.

The sertraline was started on a low dose (25mg) which was increased every couple of weeks - she's now on 75mg of Sertraline every day. I have to say the medication made her slightly worse before she got better (this is pretty standard) and that really it took three months to properly kick in and give her the full effect and the side effects lessened but it has worked.

She is back at 6th form (since third week in Feb) doing really well in her A levels, socialising with her friends again etc, looking at Unis for next year. Of course she still has down days and days of sadness about her Dad and probably always will but the medication gave her to the tools to pick her life again.

I know some people might have an issue about medication for under 18s. I don't (and actually never have) My daughter needed the help and I (nor her) have any shame about it.

We've had DD2 on the CAMHS waiting list for over a year. They wanted to refuse the referral, then someone realised that there were bigger issues. Then they offered an assessment and a 'family centred therapy' session. We went to that and DD2 couldn't talk. The therapist was all set to discharge when I pointed out that we had jumped through all their hoops, would have driven 90 minutes for a 45 minutes appointment, and would like to know at what point somebody would take responsibility for assessing DD2 to see if she was suitable for the medication she's been begging for.

Eventually I got an email saying that they'd decided that the therapies they had available weren't appropriate for DD2 so she's been put on the psychiatry waiting list. How long we'll be on that list is anyone's guess.

By contrast, DD1 was admitted to hospital and skipped all the waiting lists. She's been under the psychiatrist ever since.

Where do you live OP? I have been through similar if you need any advice just pm me . It’s so stressful going through this with no help and I had to resort to some tactics such as tweeting MPs to get anything done.

We don't get any direct help from CAMHS now, even though his anxiety is too bad to go to school and he struggles to even leave the house. The hospital education service are lovely but it is an absolute battle to try and get actual support to help him to live a 'normal life'.

I would strongly advise finding a good psychotherapist.