My daughter’s experience of an Assessment and Treatment Unit

posted on 15/07/19

When my daughter, Mia, is doing well she is happy and fun-loving.  She loves theme parks, water parks and socialising.

Mia has a learning disability and autism.  When someone has a learning disability and autism, mental health problems are often overlooked or dismissed by professionals.  This is what happened with Mia.  “Diagnostic overshadowing” meant that it was a long time before her bipolar disorder was diagnosed.

We tried two different local special needs schools for Mia.  They said they could meet her needs but we found she was just sat in a room alone.  Her behaviour became challenging, she started to self-injure and the taxis would no longer take her to school.  I couldn’t manage and residential school seemed the only option.  With hindsight, nothing else was actually offered. It was a stressful and emotional time.  Having other people look after my child did not feel right.

Things went Ok at residential school for a while.  Mia was under the care of the Maudsley and CAMHS for her mental health.  Then, one Christmas she came home and I could tell she was not right.  She couldn’t cope with things she used to enjoy, she seemed ill and skinny and elated.  We had a few good days, then her mood tipped.  She was not eating or drinking and was showing obsessive behaviours.  The advice was that she should go back to school.

So, she went back but she was just the same.  Then she jumped out of bed and ran into a window, causing significant head injuries and was admitted to a paediatric ward in hospital.  I was so worried about her.  She seemed changed and had a lack of awareness, most of the day was spent trying to stop her hurting herself or to hydrate her.  She was only 8 stone, yet she would have 6 people restraining her.  After two weeks on the paediatric ward she was sectioned and admitted to an assessment and treatment unit.

As a mum and as a nurse, I am totally shocked that places like that exist.  The Unit she was admitted to was not near us.  Depending on traffic it took three and a half to five hours to get there.  I was told it catered for people with learning disabilities and that staff were trained but seeing it was such a shock.  I saw children pacing around a unit and going to doors that were locked.  It nearly broke me.  Unless you’ve seen your own loved ones in a place like that it’s hard to believe.  

When I dropped Mia off I was told to go home and leave them to get on with it.  But she is my daughter.  I stayed for a couple of weeks.  As a mum, I was not allowed to go on to the Unit.  I was not allowed to bath my daughter or to put her to bed, even when she was really ill.  They did change the rules a bit later.  But I found it so shocking; the way the whole thing was organised; the way they talked about the children.  Even when things were not going well at school, I knew that the staff really cared about the children.  It didn’t feel like that on the Unit.  They just watched the children really.  They didn’t interact with Mia.  It was like going back in time to a Victorian Institution.  There was nothing to stimulate the children and young people.  There were always staff changes.  

It was so bleak.  It felt really bleak when I had to take Mia back after taking her out once a fortnight.  I would see her getting more and more anxious about returning, then she would try to drag me back as I had to leave.  She had to be carried in from the car.  But almost worse than that was when, 15 months later she got to a stage where she just accepted it.  She was resigned to it.  I never ever want to see that again.

It was called an assessment and treatment unit.  But Mia had the briefest of assessments when she was first sectioned and received no treatment that actually made a difference.  Her mood remained unstable.  Once you are under that sort of section it is quite frightening.  Children stay there for years.  

Mia’s admission also had a big impact on the rest of the family.  I was working and visiting Mia – I had no time for my partner or my other daughter.  I was not around for the rest of the family.  You feel guilty if you are doing anything else while your child in in a place like that.  I couldn’t focus on anything else.  It had a huge impact emotionally and financially.  I was in limbo.  I couldn’t do anything except worry about Mia.

The Unit was red flagged by NHS England (meaning that issues were identified which should act as a trigger for considerations about staffing eg a lack of patient checks or too few staff).  I was optimistic that the Care Quality Commission (the regulator) would make changes.  But it didn’t make any difference.  It was just a tick box exercise.  

We involved a solicitor to appeal Mia’s section under the Mental Health Act.  Our case went to Tribunal but they don’t listen to the parents.  It’s very dangerous the way it is all governed.  I’ve made complaints to NHSE that have been upheld but nothing changes.  Things happened in that Unit that were definitely safeguarding incidents but people think “It’s a tier 4 CAMHS facility, they must know what they are doing”

The things which finally enabled us to get Mia out were a change in Consultant at the Unit and the support of her Headteacher.  The Consultant actually had some hope for Mia.  He said “let’s see if we can make a difference” and aimed for that.  He didn’t think the current situation was the best she could expect like previous consultants.  He made the difference at the Tribunal and a discharge date was agreed. 

However, while Mia had been in the Unit, the Local Education Authority had cancelled her educational placement – as though they expected her never to get out into the community.  There was so much we had to fight for. It was only due to the school’s support that she did get out.

Kindly, the headmistress of Mia’s school arranged for staff to come up every two weeks to support me with the transition process.  We rented Airbnb’s so Mia could stay with us and get to know the staff.  The staff were fantastic and remain supportive.  They were as shocked and saddened as myself for Mia to be in such an awful environment.

Eventually (after 15 months) Mia went back to her residential school and now I am fighting hard to get her home.  Although they care, and staff there are fantastic it is not the right environment for Mia due to inconsistency and too many different people there, too many things can go wrong.  Mia comes home every couple of weeks for 4 days due to staff constraints. We are now awaiting agreement for a funding package for the house to be adapted.  We need to find the staff.  The problem is that people don’t work in a timely fashion.  Everything takes such a long time.

I tried going along with what all the experts said.  But none of it has helped her.  Her admission did not deal with the reason she was admitted.  That is no different.  But my daughter deserves to be at home.  

If Mia had been given the right environment and staff who wanted to make a difference at the outset, I think residential school, restraint and her section could have been avoided.  But expert, caring support at home is not offered.  Professionals judge the parents.  Schools and the mental health system label your child “complex”.  The approach is all wrong. Did my tiny daughter really need 6 people to restrain her?

As a mum, you feel bereft when your child is taken into a residential setting, being looked after by other people.  There should be another choice available.

Assessment and Treatment units should be shut down.  There should be much tighter controls.  It is outrageous that in this day and age children should have to live 200 miles from a family home where they are wanted.  Parents have to drop them off and leave staff to it.  These units do much more harm than good, they are not the answer and I can’t see any child getting better in a place like that. It wasn’t effective at all. 

Mia came home from the assessment and treatment unit pale and ill from not getting out and about.  Now you should see the difference, her reaction to everyone, she looks healthy again.  We are off to a theme park tomorrow to celebrate her birthday.

Surely the mental health system should be able to help children through their rough spots in a kinder way?

The latest data on Transforming Care, including figures for the number of children and adults in inpatient units, is available on the NHS Digital website here: https://digital.nhs.uk/data-and-information/publications/statistical/learning-disability-services-statistics

The names in this blog have been changed.