Special report: Are our most vulnerable young people being let down by Herts mental health services?
PUBLISHED: 07:00 21 February 2020
Does the county’s Child and Adolescent Mental Health Services (CAMHS) provide the support needed by our most vulnerable young people? Caroline Thain investigated.
A mum battling cancer has told how she fears her teenage daughter or herself will die before receiving the help their family needs from local child mental health services.
The 53-year-old, who lives in Cottonmill, St Albans, was recently diagnosed with advanced lung cancer which has spread and is fearing the worst, after years of trying to get suitable support from NHS professionals for her 16-year-old.
Although she is undergoing gruelling chemotherapy to try to stall the cancer, she is awaiting further test results to determine her prognosis.
The mum-of-two quit her job in a school to care full time for the teen, who was in and out of in-patient psychiatric care amid severe psychotic episodes, repeatedly running away from home and taking multiple attempts on her life.
She "has lost count of the number of times" her daughter C has taken an overdose, gone to hospital to see the mental health team and been told she is fine and sent home.
The former teaching assistant said: "Both of us on all these occasions have begged for her to be admitted to a mental health unit for her own safety but were always sent home. It was soul destroying for everyone."
C was repeatedly discharged from hospital without sufficient measures in place and on one occasion, she took an overdose the night she was released from a local inpatient unit.
Then CAMHS workers said it wasn't safe for follow-up care meetings to be done at the family home because of violent outbursts from C.
Yet one particular suicide attempt led to a three-day admission, resulting in a diagnosis which C has found helpful.
Still struggling, she is at home and has an allocated child mental health worker but she is not well enough to attend school and receives educational support to try to get her through GCSEs in maths and English. But her mother insists that the only way they got any help at all was through her perseverance and strong advocating.
Now the worried mum is terrified time might run out for her or her daughter, as a large tumour in her lungs, which has spread to her lymph nodes, threatens to separate them.
She said: "I've a whopping tumour - too big to operate on. When the fear hits and it's kicking in at the moment, my thoughts are very dark. I've a deep suspicion that the news is going to be bad.
"When I was told that my tumour is the biggest size grading, I just switched off. I had expected them to say it was small. I couldn't take it in and they said they'd give me a written report, so I just zoned out.
"But I'm horribly practical and I read so I am very aware my chances are not good. Will I have time to get my family in a good place?"
She explained how a new CAMHS worker said she had read all the notes but did not appear to know any of the specifics - including that her daughter was meant to be seen in the hospital café.
The former CAMHS worker was happy to meet C in the café and the new worker wasn't aware of that, because a handover that was meant to have taken place did not.
She said: "It's like they have had all common sense and empathy surgically removed. I shouldn't have to explain the basics to a paid experienced professional. But that's CAMHS for you.
"They don't know how to do it and occasionally you can get one that can - and then they disappear, moved to a different area, leaving their service users to start all over again with a new worker - who, chances are, is ***t.
"They run a very service-orientated service which is not flexible unless you kick up a fuss. If the user doesn't do what they provide, they are dumped and accused of refusing to engage. Like attending group therapy, for example, but many of these kids are not well enough to attend group therapy. It shows a deep misunderstanding of mental health and makes it hard for anyone to engage with their very limited provision."
The mum also blames a lack of national standardisation, passing the buck to other agencies and the postcode lottery nature of varying provision as key failings - sentiments echoed by many local parents of mentally unwell children.
In desperation, the mum contacted the old worker who has agreed to advise the new worker and now C is on a six-month waiting list to go back under the caseload of the old worker again.
C is due to have autism testing soon and a recent diagnosis and medication have led to fewer psychotic episodes, less self-harm and suicidality.
She added: "Things are better but still a long way from safe. We've learned so much and she has too. But the fear is always there for all of us that she'll tip back into crisis.
"I'm sure the stress hasn't helped my health. It will be interesting to see how CAMHS cope with the challenge of my illness, in terms of the impact on my child's mental health. They don't support parents or siblings.
"There are so many problems to sort out. I am going to discuss with my Macmillan nurse how best to prepare my husband and children. I just hope I will have time to sort it all out before I become too unwell."
"Self-harm is a cry for help - and they need to help"
A Hatfield mum-of-six has two children who are supposed to be receiving help from CAMHS but are not currently.
Her eight-year old son K was referred after he was excluded from a Hatfield primary school a year ago, seen once and she has heard nothing since.
Her 16-year-old transgender son D required local mental health services while he was on a two-year waiting list to be seen by Tavistock gender identity clinic in London.
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D was referred to the NHS gender clinic in November 2017 and had his initial appointment this month.
However, he was only seen twice by CAMHS - the last time was in March 2018 - despite his mother describing him as extremely distressed and at risk of self-harm, due to his gender identity and related difficulties.
Statistics suggest trans children are around 50 per cent likelier to take their own life.
The 47-year-old said: "Puberty is hard for anyone let alone being trapped in the wrong body. CAMHS are totally rubbish. He was extremely upset at times and we were left waiting for more than two years with only the GP for support.
"He was referred for self-harm, so they knew the importance of these appointments. CAMHS has a bad reputation and seeing as this is the only mental health service for our children, they need to up their service. Self-harm is a cry for help and they need to help.
"I asked to be transferred closer and heard nothing at all. I have been back to the GP since for them to chase it up but have heard absolutely nothing. I hate chasing people for appointments. Someone gets paid to make sure these appointments are sent out."
"It got so bad that I was in A&E after self-harming - only to be sent away on my own."
A 21-year-old care worker from Harpenden has revealed how failings in the service led her to self-harming and suicide attempts.
She was under CAMHS in Hertfordshire between the ages of 13 and 18 years old and firmly believes that the best hope mentally ill children have in the area is when they turn old enough to reach adult mental health services.
Describing her frustrating experience, she said: "They completely let me down. They made me wait continuously for appointments and never gave me counsellors that benefitted me in any way.
"You are mentally unwell that is why you are there but if you miss appointments or can't face talking, they say you are disengaging and threaten to take you off their list.
"After loads of being messed around, I was allocated a worker I felt I could open up to. I felt a bit better because I trusted her and she was kind. Then she left. It got so bad I was in A&E after self-harming only to be sent away on my own.
"The self-harm was a cry for help because I was not getting appropriate help from mental health services. It was only when I reached adult services that I finally got the right help and a proper diagnosis and the correct treatment."
What does CAMHS have to say about its own service?
On the walls of a local CAMHS clinic, are a selection of positive bright colourful words such as "helpful, compassion, giving, well organised, safe, timely, efficient, aim high and trustworthy".
A CAMHS section on the HPFT website includes information for parents and children about their service, suggesting parents can "help them to help themselves" alongside or while they are waiting for CAMHS services. And it recommends taking them to A&E if they have taken an overdose.
Somewhat bizarrely, it features three images and examples of what has helped (though it doesn't say what, how or why) - television, books and films, personal hygiene and listening to music.
And next to it are three images and examples of tai chi, light therapy and over the counter medications, which "scored low". These are not put in to any context either.
A page of this website entitled 'What parents and carers say about our services' is left entirely blank.
HPFT boasts that the trust as a whole was rated as 'outstanding' by the Care Quality Commission in 2019.
The same website blurb brags that "CAMHS has consistently been at the forefront of national developments in child and adolescent mental health". CAMHS cite their values as welcoming, kind, positive, respectful and professional.
But CAMHS is notorious to be widely struggling and parents the Herts Advertiser regularly speak to disclose that the majority of families involved with CAMHS are, at best, dissatisfied.
And this is despite coming to the end of a five-year government funding increase to try to improve child mental health services between 2015 and 2020.
Young Minds is a charity lobbying for improvements to provision. It describes a current "crisis in mental health support for children and young people", stating "it remains far too difficult for young people and families to get the help they need" (Young Minds website).
And depressing figures reveal that less than one per cent of the NHS budget is spent on child mental health - with only eight percent of the entire mental health budget going towards child mental health services.
Echoing our case studies' difficulties, the mental health organisation's research shows three quarters of young people become more unwell while waiting for help - with self-harming, suicidality and dropping out of school as "devastating consequences" (youngminds.org.uk).
A spokeswoman for HPFT - which runs some of the child mental health provision in Hertfordshire - said: "Our aim is to provide the highest quality experiences for all our service users, but we appreciate we don't always get it right.
"Recruitment is an ongoing challenge, but our vacancy rate is improving. Our waiting times are less than the national average with nine out of 10 young people being seen for an initial assessment within 28 days of referral.
"We regard regular communication and collaboration between service users, their parents/carers and our staff as crucial to the recovery process and try to ensure this always takes place, wherever possible.
"Our mental health liaison teams are based in A&E departments from 9am until 9pm, seven days a week, to carry out clinical assessments for young people attending A&E."
She urged anyone unhappy with the service to complain through Patient Advice and Liaison Service (PALS), adding that CAMHS was rated 'outstanding' by the CQC at its inspection last year.