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J’s Story

As part of our 20K in April challenge, we’re sharing stories, with permission, from our community every day from 13th to 30th April. All are true accounts of the reality of a random group of parents in our community. Some are professionals, others full time carers. Some have been battling for years, others are new to this dance of accessing services, navigating school, coping with shame, guilt and judgment, and keeping their child alive while trying to work, look after their other children, have a relationship, have a life. All of them deserve, like their children, to be heard and helped. 

M started to get Ill at around the age of 11, just as she started secondary school.  She slowly started to restrict her food, increase her exercise.  She was a county swimmer and upped her training.  We didn’t really notice until she was 12, but hind-site is a wonderful thing.  The next year saw constant trips to the GP, unexplained injuries, trips to specialists, scans and all sorts of examinations.  When she was 13 she was referred to CAMHS, as her weight continued to drop. We limped through CAMHS, achieving nothing, except continuing lowering of weight. She was stopped from going to school and prevented from doing any activities. Daily CRISIS visits followed by daily a&e trips.
Work suffered, home life suffered. My eldest left home, living at grandparents, sleeping on friends sofas. My life became one continual nightmare of feeding time. Aged 14, M was admitted to general hospital and an NG tube fitted. It broke my heart to see M so broken and wishing she was dead.  4 long days later she was assessed by the Highfield adolescent unit and immediately accepted.  We’d been advised to take a bag.  That day my heart broke even more.  I’d never been apart from my baby. She sobbed and she begged.
In my naivety I thought she’d  come out cured!
September 2015 M disclosed historical abuse. Things escalated, the support from her CAMHS care coordinator – why did you decide to tell us now and not in the hospital?!  She never discussed it with M again.  From this point life has been a spiralling out of control whirlwind. My life became 24 hour care. She can’t be left on her own. Someone with her 24 hours a day.  I slept with her up until 20 months ago, when she was admitted to an adult unit, she was 19 and 4 hours from home. This is her 9th admission.
Her life became a one man crusade to end her life – self harm, starvation and suicide attempts. 3 days after her 18th Birthday she was placed on an adult ward, the youngest by years.
We thought CAMHS were woefully inadequate, then we had to navigate adult services! At the age of 18, my child became an adult. All of a sudden staff wouldn’t speak to me, I couldn’t be involved in her care unless she agreed. Yet who were they sending her home to?  CAMHS have a nurturing attitude. Inpatient units talk about life and recovery. In adult units, life is tougher, they are the forgotten. There’s no education, things to occupy your time. It’s your choice – yet  M couldn’t even make the simplest of decisions. Even if her choices were bad ones, they were hers to make.  I had to sit back  and watch my child fade in front of me.
One memorable occasion was the day before my Birthday. M was struggling and I needed to get her seen. I asked if they would come to the house, as CAMHS used to. “No. If M wants help she’ll get out of bed and come here” was the response.  At this point M would try and get out of moving cars, so armed with my Mum, I took her to Aylesbury.  They agreed she needed assessing and to go home and await the call.  I hadn’t even got home, when I had to take her back.  She was increasingly agitated. When we arrived I was not allowed in the assessment – she was made to sit in a room with strangers, one was a male who I soon realised looked like her abuser.  They let her run from the meeting, then called me in and tried to carry on the meeting in between me having calls from the police. They did not care. They said she wouldn’t get far as she didn’t have any money or know Aylesbury.  50 minutes later she was detained at the railway station, a commuter had stopped her from jumping.  Whilst she was missing the adult team left me in a building, telling me not to leave, but I’d more than likely have to wait outside as they would soon be locking up.  Thankfully the receptionist knew me and said she wouldn’t leave until M had been found.  This was the CAMHS receptionist.  Whilst waiting I saw her old CAMHS psychiatrist and I said what had happened and that I couldn’t do it any more – he said they’d been waiting for 2 years for me to say that.  Why not help me?  Why did it come to us getting to where we were?
It took a year of fighting, letter writing, bombarding our CCG, PALS, MP before a suitable place was found.  That year broke me and nearly broke my marriage. I had no time or energy for anyone but M. I lived, breathed her and her illness. The resentment for it and the man who stole my daughter ate away inside me.
Life didn’t get any easier with her in hospital.  Her eating disorder took hold. The unit had said they could manage eating disorders, but they clearly couldn’t.
In our case, out of sight is definitely out of mind.  I was promised help and support in becoming M’s Mum and not her carer. I strived to have the relationship we once had.  This has never happened.
Community services are woefully inadequate. They aren’t fit for purpose.  Communication is non existent. I fight tirelessly to get her the help and support she needs and deserves.  M has completed DBT, however, knowing the skills and being able to use them consistently are very separate things.  Community have shown very little support or interest into M’s long term needs.  The only way I could get them to accept their failings and change how they handled things were to raise a formal complaint via PALS.  We’re now on our 4th care coordinator and have been assigned a social worker.
I’m fighting for M to have appropriate supported living. She needs 24 hour care, she feels different. I constantly fight a system. M is very good at tick box exercises, so keeps professionals off her back.
I mourn the daughter I have lost. I’m bitter how she’s seen just as another statistic, a number on their over stretched case load.  My daughter deserves her life, she deserves to be helped and listened to.
I hope one day to wake up from this nightmare.  But in the meantime I will continue to fight for my daughter until she’s in a position to want to fight for herself.  I refuse to sit back and watch systemic failings fail our children.
Back in 2017, when we were at what I thought was the lowest point, I came across Partnering Mental Health.  To say this group has literally saved my life, is an understatement. To have somewhere to share my deepest darkest fears and not feel judged, lifted a huge weight from my shoulders. I’ve made some amazing friends – both virtually and in “real life”.  The community has supported me, when I honestly felt I had no more fight in me.  PMH has also given me a focus.  I love supporting people and using my experiences. I want to use my battles to help others.

If you would like to donate to the 20K challenge, you can do so here:
If you’d like to sign up and fundraise as part of the 20K Challenge in April for Parenting Mental Health, you can do so here:

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