Dying to be seen: Why is it so hard to get help from CAMHS? By Carrie Grant MBE

Tania's note: Recently, broadcaster, Carrie Grant, quoted a tweet (shown below) from Dr Shan Hussein who had not had a Child and Adolescent Mental Health Service (CAMHS) referral accepted since 2014 (that's not a typo). As a parent of children with SEND herself, Carrie is a leading campaigner who uses her well-earned fame to amplify the injustice suffered by so many families. It's something I, and all of us at SNJ, admire greatly.

We're delighted that Carrie has written for SNJ today to discuss the issue of CAMHS that, despite a number of government initiatives over recent years, has failed to deliver the service it should, leaving thousands of children with mental health difficulties without help. This post comes with a trigger warning for both suicide and mental health. Carrie, whose pronouns are she/her/hers, discusses the experience of her own child, whose pronouns are they/them/their.

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Dying in the Waiting by Carrie Grant MBE

I’m going to be brutally honest here. I make no apologies. This is about my family and our lived experience. Six days ago, I knelt beside the bath and pulled my child’s head up from the water where they were trying to end their life. It took thirty minutes of continued attempts before I managed to talk them out of it and they stepped out of the bath to safety. By then the police and paramedics had arrived. Both emergency services were amazing and very understanding.

You see we’ve been here before, over many years, but with this particular child just a few months ago. Back then we were promised help, we waited…..and waited. Over the years I have worked out there seems to be a pattern where you access a higher level of care once your child is on their 2nd or 3rd suicide attempt.

So, what are CAMHS doing?

We have four children with additional needs. I explained that most of the time we manage with our children’s more difficult moments, but from time to time, one or other of our children will hit a crisis and then we have to call 999. The ambulance service took us to hospital. The question every professional asked in the 12 hours following the incident was, “What are CAMHS doing?

We left hospital with a solid guarantee of CAMHS intervention. My hopes raised, at last we may reach the criteria to access help. 5 days later CAMHS called to say they would look into it but weren’t sure what they could offer. I asked the Psychotherapist I was speaking to if my child could see them. I was told, “Unfortunately, not, I’m leaving the service.” I dared to ask why.

And then the answer came, “I have to prioritise MY mental health.”

In other news this week, on 7th July families met at Downing Street to try to raise interest from the government in looking into why their autistic and/or mentally ill children had died whilst in or under the care of the NHS. Understandably, someone, some system somewhere, needs to be held to account. 

That same day the Minister of State for Mental Health, Suicide Prevention and Patient Safety of the UK, Nadine Dorries said, “CAMHS is well-resourced and robust.”

Yesterday, in response to this, I put a simple question on my Twitter feed. I quoted Ms Dorries and asked, “Has anyone got anything to say about this? What’s your experience?” That tweet is still trending 24hrs later, with over 3m impressions. There are many who responded, some praising the individuals who work for CAMHS but “robust or well-resourced?” There is not one reply in agreement with the Minister. That alone speaks for itself. 

CAMHS should not be a political football

A deeper dive into the Twitter feed shows countless individuals and families telling their stories. I wish I could write them all here and give them the hearing they deserve. It makes for a tragic read.

And it’s not just the children and families. The feed shows many professionals’ stories too. The CAMHS staff member who cannot think where the Minister’s comment can have come from, the social worker who asks families if they can afford to go private, the teacher who is seeking help from the private sector for his pupils, or the GP, Dr Hussein, who hasn’t managed to get a CAMHS referral accepted since 2014.

Nadine Dorries MP replied to me, “Hi Carrie, you may know that prior to 2017, no government invested in or prioritised MH services. This government did, has and is funding a MH long term plan, focusing on children and young people by £2.3b per year. That’s more than the budget for the entire U.K. prisons estate.”

The Shadow Cabinet Minister for Mental Health, Dr Rosena Allin-Kahn weighed in, “If Nadine Dorries thinks CAMHS is well-resourced, perhaps she could explain why some providers turn away 80%+ of referrals? If she has an answer, could she explain why some children waited 450+ days for autism support, 280 days for PTSD and 195 days for help after an overdose?”

Carrie Grant MBE
Carrie Grant MBE ©Sophie-Mutevelian

CAMHS must help all children who need it

In 2017, I hosted NHS England’s Conference, where Director for Mental Health, Clare Murdoch, talked about the “Five-Year Forward View for Mental Health” (I’m guessing this is the MH long term plan Nadine Dorries is referring to in her tweet). At the time Clare shared that only 25% of referrals to CAMHS led to an appointment. She promised this would change. 

It has. We are four years in and the figures are even worse.

Those stats are backed up by Young Minds UK’s report that showed CAMHS only accounts for 0.7% of NHS spending, and only 6.4% of Mental health spending. When you consider 50% of mental health issues are established by the age of 15, it doesn’t paint a pretty picture.

Carrie and David Grant and family
Carrie and David Grant and their children (and doggies)

100,000 children have still not gone back to school since lockdown. In our SEND community, we know that many of these most vulnerable children will make up a large percentage of that figure.

Something has to change. Not just sticking-plaster-change but systemic change. Change that happens across education, health and social care. Societal change, a mindset change. 

It’s possible. 

There are enough of us out there wanting to make it happen. Enough of us out there who want to join in and collaborate. Whether we are a politician, a professional a family or the individual we have to find our humanity, our love and care for one another, we must continue to speak up, to call it out, to fight until change happens.

Some of the CAMHS tweets

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About Carrie Grant MBE

Carrie Grant MBE is a BAFTA award-winning broadcaster with a TV and music career spanning 40 years. She was awarded an Honorary Doctorate and an MBE for her services to Music, Media & Charity. Carrie has been President of Unite Union for Community Practitioners and Health Visitors and Patient Lead for The College of Medicine. Carrie is a Crohn’s Patient and Ambassador for Crohn’s & Colitis UK as well as being ambassador for The Diana Award, The National Autistic Society and Adoption UK. Carrie is Mum to four children with special needs, one of whom was adopted. Carrie and David run a support group for over 150 families of autistic girls (+trans/NB).

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