"Left feeling unheard"

Staff attitude

My teenage daughter has been suffering from chronic fatigue since first suffering from Covid in 2022. As a result, OCD symptoms resurfaced, which she had experienced before, at the age of eight. At that time she was treated by CAMHS as an outpatient in Dundee. She appeared to have fully recovered. 

Recently her symptoms have become much worse, caused by anxiety and low mood from her chronic fatigue and not being able to attend school or do well in her National exams. She was referred for a CAMHS assessment. They judged that she does need treatment and she is on a waiting list.

Recently she attended the GP, who gave her a number and told her to call it and ask for the Duty Mental Health officer, if things got worse.

At the weekend she had a rare outing with two friends, when they went out for a walk, which has led to a days-long crisis. She was highly anxious before leaving. On returning she was exhausted by the activity and could not cope with the endless rituals she needed to perform to feel clean. Making things worse, her hands are badly chapped and bleeding from all the hand washing and she was dreading performing any action at all, because that would necessitate further hand washing. She curled up on an armchair in the fetal position with her jumper pulled over her head and legs, where she remained for the next 15 hours, missing dinner and breakfast. On Sunday evening, my daughter told me (from underneath her jumper) that she was so depressed and I can't go on living this way. 

At about 12.30 on Monday, she got up to go to the toilet, before continuing to sit unmoving on the floor outside the bathroom, albeit this time in a more upright position, where she was able to eat some toast. Of course, this is all made worse by her chronic fatigue.

I called the number the GP gave her and managed to secure an emergency CAMHS phone appointment with the duty mental health team for Monday afternoon (although they said they are called something else now). My daughter talked on the phone to the nurse, who said that because she went out with her friends yesterday, she is clearly perfectly able to function. 

The nurse, asked my daughter if she had any future plans to go out and she said that there was a school event in a couple of weeks. This was interpreted as clear proof that my daughter has plans to continue socialising (although it is not at all clear to me that she will be well enough to attend. To me, she says that she strongly regrets going out with her friends because of the consequences.) 

In any case, the treatment my daughter is waiting for will not be expedited, since the nurse decided she is not at any risk and is able to function. In the staff member's defence, my daughter did not recall using the word depressed. However, as anyone with experience of mental health should know, sufferers are not always the most reliable reporters and do not always have insight into their own condition.

My daughter is slightly better now, in that she is no longer lying in the fetal position. However, she is still not able to function normally, even within the house, let alone going to school.

I feel completely gaslit by my conversations with the nurse, telling me that my daughter is functioning and that there has been no change in her condition since the initial assessment. At that stage, my daughter was occasionally attending school and felt in control of her symptoms enough to play them down when talking to the psychologist. She is now crying out for help and at the point of desperation. The Nurse seemed to seize on certain facts, eg that my daughter had gone out yesterday and there is a Ceilidh at school in two weeks, and ignore others, like the missing of meals and the extreme rarity of her going out at all. My Daughter's notes should say that a particular concern is her weight because of contamination fears over food. Missing meals is not safe for her, and it happens regularly. 

I sense that the truth is CAMHS do realise she needs help but they just do not have the resources to provide it at the current time. But the sentiment that was expressed was that Iris is not really that unwell, that I am making an unnecessary fuss, and she will need to get a lot sicker before they do anything to help. Or maybe they are waiting for her to turn 18 when they can pass her on to adult mental health services. 

I also do not trust the Nurse's knowledge or skills. For example, when I mentioned medication she said that the only medication available for anxiety is beta blockers and launched into a long explanation of how they work. Of course, there are many other medications available for anxiety. The Nurse implied I was irresponsible for even suggesting medication, but she is not really qualified in this area. 

My daughter and I both felt utterly drained and dispirited by our conversations with the Nurse. My daughter is being abandoned in an incredibly difficult situation with no prospect of help, since CAMHS refuse to estimate the length of wait. The  message was: don't expect any help. 

Staff skills