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CAMHS: Taking the First Steps

Diagnosis - if it comes - is a profoundly emotional point for parents. It may be the key to further support, but at the same time, it can feel devastating to have a 'label' applied to your beloved child.

Being a parent of a primary school aged child is a stressful business. The responsibility, the hours, the negative feedback (often delivered at top volume in a supermarket aisle): all combine to leave those of us with young offspring feeling, at times, ground down and wrung out. But these everyday pressures are as nothing compared with the stress and worry experienced by parents whose young children are suffering from mental ill-health or struggling with behavioural issues. Mumsnet has hosted tens of thousands of discussions among parents in this position over the years, and the sadness and anxiety felt by those who find themselves in this position - particularly in the early days when they're still searching for diagnosis, support and effective treatment - is palpable.

For many, the path to medical diagnosis and help lies through Child and Adolescent Mental Health Services (CAMHS), the NHS's specialist mental health service for children and young people. Drawing on the experiences of our users over the years, we've pulled together this picture of what it's like for families approaching CAMHS for the first time.

The service's involvement in a child's case may be prompted by parents bringing up concerns, or by schools or GPs noticing a difficulty, but referrals to CAMHS must come from professionals (doctors, health visitors, school staff, social workers and so on). Sometimes there's a referral form for parents to fill in, which can itself be a distressing experience:

'Just had a form from my daughter's school to fill in. It was heartbreaking; she has severe depression, has made no friends at school and suffers school phobia. I had to put in some very private info about my own mental health. I'm so worried they won't take our case - where would I go next?'

This period - when a first CAMHS appointment is coming up - is a period of acute anxiety for many parents.

'I feel like I'm going mad - thinking/knowing that there's a problem, and being expected to assume responsibility for his "eccentricity" (as the school put it).'

'I don't like the idea of her going off and having sessions with a therapist, sharing her innermost feelings with a strange adult and us not knowing what happens in that room. Is it normal to feel like this?'

Once parents have a referral, there can be a wait for the first appointment: anything from a few weeks to several months. CAMHS, unfortunately, is a bit of a postcode lottery, and according to Mumsnet users (and the House of Commons' Health Select Committee), the sad truth is that the quality of the service and the length of the wait can vary significantly from area to area.

The first appointment can take different forms:

'Our referral came through quite quickly. We saw a woman from the CAMHS team and she recommended some one-to-one sessions for my daughter - but warned me there would probably be a wait for those. My daughter is VERY angry with me about all of this, especially since her teacher knows about it all. I feel terrible, both emotionally and physically.'

'In our case the CAMHS worker came and spoke to us first and then arranged an appointment to see our son. She usually saw him at home but sometimes at school and everything was done in a way that he was comfortable with. Our son became very fond of her!'

In some cases, after the first appointment, the CAMHS team will decide that the child won't benefit from further CAMHS help. This can be a big knock-back for parents who were hoping for more help with a troubling situation, but it doesn't have to be the end of the road - although, as many posters on Mumsnet's Special Needs board will tell you, you may need to dig deep and fight for the help you think your child requires.

'If you don't get the answers you need, ask for a referral to a specialist diagnostic service rather than being reassured that all is ok.'

Alternatively, the CAMHS team may set up a second appointment for more specialised assessment. These can be a bit more in-depth, and may involve diagnostic tests.

'It took the form of a questionnaire... Unless my son scored a certain number of points, they'd not give anything in the way of support. But I did feel heard. They saw him in action, and I was truthful.'

Diagnosis - if it comes - is a profoundly emotional point for parents. It may be the key to further support, but at the same time, it can feel devastating to have a 'label' applied to your beloved child.

'Try to remember that a diagnosis doesn't change your lovely child: it's just a signpost to the best ways to support. No matter how much you're expecting and wanting and needing it, it's totally normal to be shocked and to burst into tears.'

'A diagnosis means answers not only to your questions but also - as the child gets older - to theirs. Children often figure out quite early on that they're "different"; having real answers means they don't come up with their own explanations, such as "I'm a freak", "they hate me", "I'm worthless", "I'm so stupid". That understanding means that more of their self esteem remains intact.'

A diagnosis will often bring a targeted programme of treatment for the child. Here, again, Mumsnet users' experiences vary widely. Some report fantastic, effective treatment and support; others are disappointed, and sometimes angry, at what they see as inadequate provision.

'CAMHS saw my son in school initially, then did a home visit. They saw him in school about six more times and ensured the school had SEN support in place and that he was put in a nurture group; they also referred him for [further specialist assessment].'

'Our local CAMHS diagnostic team were very good about the diagnosis. Unfortunately there was little follow-up support for our child, apart from the lead clinical psych keeping us on his books to support me and my husband. Nothing for our child's anxiety at all, despite suicidal meltdowns.'

CAMHS may offer support to the family as a whole, as well as to the individual child:

'Family therapy was great, and sessions just for me were hugely helpful. The psychiatrist has been a great and calm support; she did the initial testing and then passed us on to a specialist team, but since diagnosis she has been fab and very helpful in managing my daughter's school with me.'

If you feel that your child is not being helped, the advice is to keep talking - to the CAMHS workers or to your GP, health visitor or school staff: whoever seems to 'get' your situation best.

'Our daughter was referred for a number of issues. We had six sessions where relevant issues were never broached until at the penultimate session I was told that we had been referred to wrong arm of CAMHS... Another referral was made and we are getting excellent weekly support where [her difficulties] are all being addressed. It's still relatively early days, but I feel confident that my daughter is being looked after with the right level of support (at long last).'

With or without diagnosis or treatment, your child may eventually be 'signed off' from CAMHS - hopefully with any relevant information and recommendations being fed back to the his or her GP and school.

'Once we got the diagnosis we did get signed off from them fairly quickly, but they did keep the school informed. In this area there is reasonably good contact between CAMHS, the primary mental health service and the schools.'

So if you're a parent in this situation - maybe awaiting a first CAMHS appointment, or fretting in waiting-list limbo - here are a few final words of support and advice from the many parents on Mumsnet who've been where you are right now:

  • Do some research before the initial assessment (you may find Mumsnet's Special Needs boards useful): 'if you have a plan in place and visions of a way forward, it's less mentally and emotionally draining.'
  • Try to grab the opportunity - and take a moment to congratulate yourself on getting here. 'Be open and honest about the issues and work with them towards a solution. And feel proud of yourself for acknowledging there is a problem and getting help for your son/daughter.'
  • Although it's really difficult, try to manage your expectations. You've every right to expect the very best treatment and support, but you probably won't get a magic bullet. 'My biggest problem is I'm looking for a quick fix, and I know that isn't going to happen.'

Young Minds Matter is a new series designed to lead the conversation with children about mental and emotional health, so youngsters feel loved, valued and understood. Launched with Her Royal Highness, The Duchess of Cambridge, as guest editor, we will discuss problems, causes and most importantly solutions to the stigma surrounding the UK's mental health crisis among children. To blog on the site as part of Young Minds Matter email