New year, new beginnings

new yearWe recently said goodbye to Nora’s CAMHS* counsellor. This wonderful woman first met us when Nora was at her worst.

She was no longer speaking, had stopped eating and wasn’t able to do many of the normal day to day tasks most of us take for granted. She was self-harming and suicidal. She had been hospitalised on several occasions, and was assessed by CAMHS every time she ended up in hospital.

Despite the well-documented stories of how difficult it can be to access children’s mental health services, this wasn’t our experience. From the outset, CAMHS were available and willing to help Nora.

However, as we were already paying for Nora to be treated privately, we had to make a choice: stay with the private service or move to CAMHS. Initially, we chose to stay within the private sector.

ambulance.jpgWhat changed our mind? A number of factors, including an afternoon of confusion following one of Nora’s terrible ‘meltdowns’. Normally, I was able to manage these episodes. On this day, things got so bad I ended up dialling emergency services, who sent an ambulance to the house. The paramedics immediately decided that Nora needed to be hospitalised. There was just one problem…

Because Nora was being treated privately, the paramedics didn’t know what hospital Nora should be taken to. They called our nearest NHS hospital, who told them Nora needed to be taken to the private hospital where she was being treated as an outpatient. But when I called the private hospital, they told me they couldn’t see her as it was an emergency and they didn’t deal with emergencies.

Several phone calls later, we ended up at an NHS hospital in a nearby town. We stayed there for several nights, where Nora was – once more – assessed by CAMHS. It was at this point that we decided to switch from the private sector to the NHS.

In retrospect, I’m pretty sure this decision saved Nora’s life.

The care we’ve had under CAMHS has been second-to-none. During the worst of Nora’s illness, we had mental health workers calling to our house daily, providing much-needed support. There were people I could call, twenty-four hours a day, when I was worried about my daughter. We had a team of caring, dedicated people, all doing their best to keep my daughter alive.

This was very different to the private sector where I had one phone number for one psychiatrist. In all the time we were under her care, she never once returned any of my phone calls.

Since that first meeting with our CAMHS counsellor, Nora’s recovery has been remarkable. This is largely thanks to her dedicated CAMHS carers, who do one of the most important jobs there is.

Lack of access to children’s mental health services has been widely document. I’ve blogged about it here previously. Understandably, parents who cannot get help for their children feel angry and frustrated.

These parents are right to be angry. In the UK today, three in four children with a diagnosable mental health disorder do not get access to the support they need. For those lucky few who do get allocated a service, the average waiting time is almost two months (and far longer in some parts of the country).

But we can’t blame CAMHS workers for the woeful state of children’s mental health services. Instead, the blame lies with the people making decisions around how public funds should be allocated.

Today in the UK, only 0.7% of the NHS budget is spent on children’s mental health. Without adequate funding and resources, CAMHS are simply unable to support the growing number of children and adolescents being referred to them.

young minds.jpgIf you care about children’s mental health, and you agree our government needs to do more to support essential mental health services, now is the time to act. Lobby your local MP or sign the Young Minds’ petition for a new era for young people’s mental health.

Let’s not stop telling our elected politicians they need to do more to prioritise the mental health and wellbeing of future generations.

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*CAMHS stands for Children and Adolescent Mental Health services

 

 

A diary of depression

girl on beachThis time last year, Nora’s illness was only beginning. We had no idea how bad things would become. We never could have imagined that our eleven-year-old daughter would reach a point where she was so ill she wanted to die.

For some time, I’ve wanted to write about how Nora’s illness progressed, but I’ve never been able to get the words down. It’s always been too painful.

But…I want other parents – who are going through something similar – to know that they’re not alone.

So, I’ve finally written something. I hope it helps.

Month one

Nora’s anxiety has become unmanageable. The only way I can get her into school if we go for long walks beforehand. This means getting up early and walking for up to two hours before school.

I know that Nora’s already in a dark place, and she needs help. Through our GP, we’ve got a referral for a private consultation with a psychiatrist. Apparently, Nora isn’t ill enough for a CAMHS referral.

Month two

The psychiatrist thinks Nora may be suffering from depression, although this condition is – apparently – extremely rare with children as young as Nora (she is eleven).

Because of Nora’s age, the psychiatrist rules out anti-depressants, and recommends a ten-week course of CBT counselling. My husband and I are relieved. It seems inconceivable to medicate our eleven-year-old daughter with anti-depressants.

Month three

The CBT sessions aren’t helping. Nora continues to deteriorate and I suspect the counsellor doesn’t really know how best to treat her.

Nora’s school have suggested that trying – and failing – to keep Nora in school is counter-productive. The counsellor disagrees and thinks we should keep sending her in.

We take the school’s advice, because it feels like the right thing to do. Nora stops going to school.

By now, Nora is self-harming and suicidal. More than once, we’ve ended up in hospital, where we spend nights on ‘suicide watch’. Nora undergoes several psychiatric evaluations. These confirm what we now know: Nora is suffering a severe depressive episode.

Nora’s psychiatrist prescribes anti-depressants. We are relieved. It’s clear Nora needs more than weekly counselling sessions to get her better.

girlMonth four

Nora has stopped speaking. Completely. The only time I hear her voice is during her terrible meltdowns, when the weight of what she is enduring simply becomes too much.  These happen several times a day.

Following one particularly bad episode, we end up back in hospital. We are given a private room, because Nora’s meltdowns are so upsetting to the other children on the ward.

For the third time, Nora is assessed by CAMHS, who tell us they can’t treat Nora while she’s being seen privately.

We have to make a choice. The psychiatrist’s secretary calls me and tells me Nora will get much better treatment under CAMHS. I take her advice and we end the private treatment.

Month five

We are now under the care of CAMHS. We now have a team of people looking after us. There are people I can phone at any time of the day and night. Mental health professionals visit us at home several times a week. We have a new psychiatrist and a brilliant counsellor.

Time and again, these professionals tell me they have never encountered a child with symptoms as severe as Nora’s. This is frightening, but also oddly reassuring because I know she is – indeed – very, very ill.

This month is Nora’s birthday. Her friends come to visit with presents. She can’t speak to them, but they all give her hugs and I’m glad they’ve come. They cry, because they haven’t seen her since she fell ill.

She is pale, gaunt and silent. She has lost so much weight, her friends look like giants beside her.

Month six

Nora’s CAMHS team tell me they are ‘flummoxed’ and simply don’t know how to treat her. If they cannot come up with a plan soon, the next step will be to admit her to a psychiatric unit. This is a specialised unit for teenagers with severe mental health problems. Typically, children in this unit are aged from fourteen to eighteen. Nora is twelve.

We are told Nora will have to be fed through a tube if we cannot get her to eat.

Month seven

We have a care plan! It’s pretty basic but it feels like a huge step forward. It involves Nora doing things like getting out of bed by herself, eating regularly, getting dressed and getting fresh air each day.

Nora doesn’t think she will be able to do any of these things. She locks herself in the bathroom and tries to cut her wrists. Luckily, with the help of a neighbour, I’m able to knock the door down before she cuts herself too badly.

Although this is awful, it’s also a turning point. Gradually, we see tiny signs of improvement. And then something wonderful happens. Nora starts speaking again. Whispers at first, just a few words every now and then.

But every single word is precious. Over the course of her illness, I’d forgotten what her voice sounded like; I would watch videos I’d recorded before she fell ill, simply so I could hear her speaking.

Today (one year since the beginning of Nora’s illness)

Nora is speaking, eating, exercising and engaging with life. She sees her friends. She goes to the gym and goes for long runs most days. She writes poetry, and takes acting classes. She is rehearsing for the lead role in a play.

We don’t know what the future will hold but, then again, none of us know that.

girls danding