safety-300x195C has severe learning disability.  She lacks capacity to make the decisions to maintain her own safety.  When she was 10 she was really unwell and we started to use bed rails to stop her from falling out of bed.  As she grew older, we used them because she was very capable of sitting herself up on the side of the bed and then standing up alone but didn’t have the strength and balance to walk independently.  When she was alone at night we were concerned about her falling.


When she was 19 years old she moved to a residential college where she stayed throughout term time.  She had her own bedroom and the care staff wrote a plan of care and provided her with a bed with rails just like at home for the reasons I gave.  The only difference was that at night, the bed was lowered right to the floor.


When she settled in she used to have lots of fun with her carers, and one evening she became very high spirited.  Not wanting the fun to end, and as the bed was so low, she climbed over the bed rail to the floor.  I mentioned this incident to our OT who was concerned.  Social care investigated as they thought that as C was capable of climbing over the rails, the rails were restraint and we were putting her at risk of injury from falling.  They wanted to explore C’s capacity to make her own decisions on what was safe and to determine if the rails were in the best interest or not.  They had to decide if there was a greater risk of injury with the rails on or off.


After several months, the decision was made that C did lack the capacity to be able to maintain her own safety, and that she was capable of climbing over the rails, they posed more of a risk on the bed than off.  They wanted me and her carers to take them off and use a crash mat on the floor with an alarm on her mattress which would alert me in the night if she climbed out of bed.  I felt quite defensive that I had cared for my daughter for the past 19 years and had kept her safe despite many challenges, and now that she was over 18, I was no longer considered to be the right person to make that judgement.  The decision was to be made by people who had only known C for a short while and I felt that that decision was going to put her at risk.


I argued two points. Firstly that during the night at home there was nobody awake, and that C may try to stand up alone and then fall and injure herself.  Secondly that if she was to fall to the floor, that I would not be able to stand her up again.  I felt that these risks were far higher than the possibility of injury from climbing over which had been an isolated incident and was due to high spirits and the bed being so near to the floor.


Social care professionals did listen to me and we continued to talk until we found a compromise.  I would continue to use the rails, but I would have the bed in its lowest position, a crash mat on the floor and use a bed alarm which would alert me if she tried to climb off the bed.  I felt that my views were listened to and that my daughter’s very individual needs were considered.  Two weeks later, I received a call from the Social Care OT to see how things were going.  She said they had found their decision very difficult to reach as it really wasn’t simple.