Nadine Dorries has been causing a bit of a stir on twitter at the moment. Following her tweet that “CAMHS is well resourced and robust” many parents shared their stories of their own experiences of CAMHS which suggest anything but a well resourced and robust service. Nadine also tweeted “we lead the world in the delivery of [mental health] services” and “we are not in the middle of a MH crisis”.
Mine is just one point of view and may not echo the experiences other families have had, but sadly I think it does. From where I’m sat these statements are so unbelievably out of touch and inaccurate, especially coming from the Minister of State for Mental Health, Suicide Prevention and Patient Safety of the United Kingdom (there’s a job title and a half!). How can she possibly do anywhere near a good enough job if her head is buried so far in the sand that she is arrogant enough to state that we lead the world in the delivery of mental health services?
We actually haven’t had much interaction with CAMHS which I’m becoming increasingly glad about, but here is our experience of this robust and world leading service:
First of all there was the fact that we couldn’t even get a foot in the door to get Katie assessed for autism because CAMHS massively over emphasizes input from professionals over parents. Our GP was supportive and felt that Katie should be referred for assessment, but her school was not. They said there was no evidence and they wouldn’t be involved in a referral. Obviously it wasn’t directly CAMHS’s fault that school were so unhelpful but it wouldn’t have been such a problem if CAMHS put a bit more weight on parents’ opinions in the first place. We were told we could self refer but because we didn’t have support from school we would be at the bottom of the pecking order and Katie probably wouldn’t get offered an assessment. The GP also backed out and said they couldn’t support a referral if school wouldn’t. So that door closed fairly quickly thanks to the feeling among the powers that be that they are best placed to refer or not refer a child and the concerns of the parents don’t really count.
Let’s say school had put in a referral for us – the waiting list at that time just to get an assessment was 2 years. This was pre covid and I’ve since heard that it’s more like a 3 year wait now, although I don’t know how accurate that is. There is no reason to assume it wouldn’t still be at least 2 years though. Let that just sink in for a minute. CAMHS stands for Child and Adolescent Mental Health Service – this is children and teenagers we’re talking about, and we’re expecting them to wait 2 years just to get an initial assessment never mind any support. When I had post natal depression after having Alice I had access to the GP, the heath visitor, and various mum support groups. I had options available to me. I tried the support groups first and when I found they weren’t really helping I went back to the GP who prescribed me medication straight away. Why do children not have the same access to support and help? Why aren’t children and their families believed and instead a bunch of authority figures are required to get involved? When I had PND no one asked for reports from my husband or my employer or expected them to provide evidence that yes I actually did need help. Children are already struggling when they get to the point that a CAMHS referral is needed, so to expect them to wait for another 2 years is shocking. I would have been beside myself as an adult if having reached out to my GP about how I was feeling he had told me to stick it out for 2 years and see how I got on.
In our case we were fortunate to have the money for a private assessment which led to Katie’s autism diagnosis and the process took a couple of months. If we’d have gone on the CAMHS waiting list in March 2020 like we requested, we would likely be looking at another 8 months wait to be seen. As it is she was diagnosed in October 2020 so we’ve had the last 9 months to learn about autism and access some support for Katie. The amount I’ve learned in those months has been invaluable, and it’s horrible to think of all that time that could have been wasted if we were still hanging around waiting for CAMHS.
At the start of this year Katie was struggling big time with school and the various lockdowns, and she started self harming and expressing very negative views about herself including that she deserved to feel pain, everyone should hate her, she didn’t know why she had been born just to be unhappy, and she wanted to die. I filled in a referral form with the Emotional Health Academy, but on their form it also said that if the child was already self harming then CAMHS should be contacted…so I did what they said and contacted them. CAMHS did phone me back to be fair, but their advice was non existent. They told me to contact the Emotional Health Academy and when I pointed out that I already had and that the EHA’s advice was to contact CAMHS, they didn’t seem to have anything to say and just told me again that the EHA would deal with me and I should wait to hear from them. The guy I spoke to was completely dismissive and said I should encourage Katie to scream out loud to release her emotions, followed by a ‘joke’ about how she’d best do it into a pillow and not out loud as we wouldn’t want to disturb the neighbours. We were well beyond the point of screaming into a pillow at that time. He also told me to hide the knives.
Much fun as it was to be bounced between CAMHS and the EHA while no one actually did anything, I also spoke to the GP who said that yes Katie should be seen by CAMHS and she put in an urgent referral for us. They wrote back to say that Katie didn’t meet the criteria for CAMHS intervention and she would be most appropriately helped by services accessed via her school. Yep, the same school that also insisted Katie wasn’t autistic, said she didn’t need the assessment, and didn’t even acknowledge it when I contacted them to say that she was self harming. I’m not entirely sure who does meet the criteria for CAMHS intervention. Presumably you need to be at the point where you’re actively trying to kill yourself rather than just hurt yourself. CAMHS also suggested that I speak to the school SENCO (which I had already done repeatedly) and yet again suggested that I refer Katie to the EHA (which I had already done and made them aware of that fact). They ended their letter by informing me that they would be closing the referral.
So that was our first official dealing with CAMHS and it got us precisely nowhere. All we got was snarky comments, advice to try things that we’d already tried, and case closed. I went back to the GP who went back to CAMHS on my behalf. This time the letter I received from them said that “CAMHS will contact the family as a routine triage to explore what support has been accessed”. Firstly, what is routine about an 8 year old hurting herself and saying she wants to die? Secondly that letter was sent in February and no one from CAMHS has contacted me since then.
The Emotional Health Academy was only marginally better and that’s not saying much. They put me on a waiting list for a parenting course which is starting next month, so that was a 5 month wait. Maybe I’m taking it a bit personally but I don’t think a parenting course is really going to help my child. Where are the services that support Katie directly? I’m not for a moment saying I’m a perfect parent and I’m more than happy to do courses. I’m the first to admit I knew next to nothing about autism and it’s been a steep learning curve. I have completed courses on autism and anxiety, I have read books and blogs, I’ve joined groups on social media which are run by autistic people to educate others, and I’m happy to do it because I think it’s relevant and necessary. But I don’t think an appropriate response for a self harming child is to wait 5 months and then stick the parent on a course.
Thankfully Katie is no longer self harming but I’m very aware that it’s something that might happen again in the future and the scary thing is I don’t feel any better equipped to help her through it and I have no idea where I would turn for advice. It’s certainly not forthcoming from CAMHS. We ended up paying privately for Katie to see a therapist. We are moving her to a new school where she will hopefully have more support systems in place. We are continuing to learn and adapt at home. We also found a local charity that runs a youth group for autistic children and were also offering a well being course at the time that Katie was really struggling. Again we are fortunate to be able to afford to pay for therapy, and the charity is just something we’re really lucky that I came across when I was researching things that could help. At no point was it highlighted to us by CAMHS.
If CAMHS is some trailblazing service leading the way for the world then we’re all in trouble. My perception of them is that they are underfunded and under resourced. If they are as well resourced and robust as Nadine Dorries believes, that just makes them negligent.