Created on 26 September 2016

In total, there are about 280 people with learning disabilities in NHS Learning Disability units at some point during the year.  Many are placed there due to Compulsory Treatment Orders (CTOs).  They can  end up  staying for up to 9 years, long after they should have moved back to the community.

Earlier this year the Mental Welfare Commission found that at least one third were ready to live in the community but there is no place for them to go.  The worst was in NHS Lothian, 46% are in hospital when they no longer need to be.

Where compulsion is used people with learning disabilities have it tough, spending an average of 4 years detained in hospital.    For people without learning disabilities it was less than 2 years.  

And it is  happening to more. Between 2006 and 2012, there was a 39% increase in the number of people with learning disabilities subject to compulsory measures       In comparison, in the same period, there was just a 7% increase in the use of compulsion for people without learning disabilities.

Mental Health Tribunals are meant to provide scrutiny so people  are not treated  unfairly.  But of  1,378 application for CTOs in the first 8 months of this year, only 1.8% (24) were rejected.    Once you are in it is easier to keep you in.  Of 289 applications to extend a CTO only 2 were rejected.

Sometimes the threat of a CTO is enough.   For nine years Daniel Young from Dundee lived in his own house with 24 hour support from a care team.  He was happy and enjoying life. However in 2014 things started to go wrong.    Daniel reported feeling insecure and unsafe in his home, resulting in verbal aggression towards staff and physical harm towards himself.   Staff responses, in effect, punishing Daniel,  helped to escalate his concerns and behaviour, until there was a “breakdown” in care provision in January 2015.

Rather than deal with his care, I as his Welfare Guardian, was only given the choice of medicating Daniel at home or admitting him to a NHS assessment unit.  If I didn’t choose one, then a CTO would be used.

In order that  Daniel had a place of safety, I chose the  NHS Unit while we tried to find a more suitable care provider.   Things haven’t gone well for Daniel in the last year. He has become depressed and withdrawn; a stark contrast to the articulate and humorous young man two years ago.    And 18 months on,  no suitable residential placements have been identified for him.  His mental health continues to deteriorate so significantly that he may not be fit for discharge by the time a home is found for him.

There is a lack of adequate care and support for some of the most vulnerable people in our society.  The growing use of CTOs indicate that mental health services are being used to respond to what is in many cases an issue of inadequate provision of support.

Mental health services not should serve as a buffer for lack of social housing and adequate community services.   Two things that might help change this are:

The Scottish Government’s review of the Mental Health Act in relation to people with learning disabilities and autism might help by providing new rights to services and support.  But the review proper won’t start until April 2017 and any resulting legislation is likely not to be implemented until well into the 2020s.

Over the summer the launch of the “Shared Ambition for Social Care”  aimed at rethinking the whole approach to the funding of social care in Scotland.  We do need a different approach that can tackle all the problems that we face from low wages to inadequate services otherwise people like my brother, Daniel will remain trapped and lost in the wrong place.

By Ian Hood & Hannah Young


It Kept Going Wrong

Created on 17 March 2016

They tried to help me daughter with a pre-visit.   But in the end this made no difference.

She was put in a unit where there was a clown entertaining the other patients.  She is frightened of clowns.  The nurses had been told noise is an issue but nothing was done about the clown.

I asked if she could be taken down stairs as she kept asking for tea which would have helped to settle her.  I was told “No.  There is no more tea being done till next morning.”   I had been told she could drink up till 8 o’clock but they still told me “No as she could get burnt”.  I told them her tea is usually 90% milk and I had a spouted cup and I would supervise her at all times.  They still refused.

She normally has her medicine at 8.30 and I asked if she could have hers first as this would calm her and get her to sleep.  However the nurses started drugs at opposite end of ward.  It was 10.30 before she finally got her meds.  By this time she was in a state and I was asked if I could calm her down as other patients needed sleep.   But she was in a four bed unit with only one other patient.  At the same time the next unit had only just had TVs and lights turned off.  Anyway my daughter was awake all night.

Next day after her operation she was put in single room where we were forgot about.   I eventually had to ask a nurse if she could sit with her so I could get to the toilet and have something to drink as I had nothing since I arrived the night before.  I had to wait an hour.   In the event I was out of the ward for only 15 mins as the canteen was closed and all I managed to get was a cold drink.

On my return to the room my daughter was hanging out of bed as she tried to get out but got stuck because of the drips and the sling her leg was in.  There was no nurse anywhere despite the alarm going off.    When the consultant came, I asked to be sent home as we were both stressed and the stay was making matters worse.  But they kept us two more days until she was off morphine before agreeing to let us home.