People not regimes – communication, rights and understanding

In December 2018 CQC were asked by the government to look at how restraint, seclusion and segregation are being used in services.

Learning Disability England started talking about this with some of members.

You can see more about what we heard here

We heard from some members about their experiences.

Understanding what is possible and knowing your rights

Joseph and his Mum Claire told us what happened to him as a young man:

Due to a significant personal budget and highly experienced and trained staff, Joseph has had no issues since 2015 and now lives a full inclusive life in his community.

Before then Joseph was verbally abused by a member of staff. When his behaviour escalated as a result, he was physically restrained by 4 people holding him down on the floor. This happened even though Joseph was on the floor anyway. 

The use of restraint did not appear to be remarkable or objectionable to either provider staff or to staff at the local authority. I was given the impression by both that this was acceptable.

Although Joseph’s communication difficulties meant that he spoke very little about what had happened to him at the time, the prospect of returning to unit was very distressing and he refused to stay overnight. It was only years later that Joseph found the words to describe what had happened and the way it had left him feeling.

It was only when I learned about positive behaviour support and the use of restraint did I realise that what had happened to Joseph was not right.

Since then I have tried to have the incident investigated fully, although the results have been very disappointing. It feels like both the authority and the care provider are more concerned with defending the physical restraint of my son by their staff than wanting to prevent this sort of incident from taking place again.     

Joseph remains scarred from his experiences and is still looking to take legal action against the local authority because he believes they did not keep him safe. I am worried that the authority and providers have not learned from Joseph’s experiences, and that other people may experience similar treatment.  

Investing in communication skills

“a lot of the issues that I have seen boil down to lack of communication or not being able to know how to communicate with people who require extra support”

As a support worker Mel says “During my induction week I spent two days learning techniques of physical restraint and I later had regular refreshers either at staff meetings and also yearly.  Yet there was only half a day on communication”

Mark {Mel’s son} is now supported by his local community which includes college and going to his local pub and catching up there with Grecia, bar staff at the Anchor Pub.  She said that if anyone gives Mark a hard time they’re out.

Families should be listened to and respected, certainly if bad practice is taking place.  However, it’s about the individual and for the individual – The 2014 Care Act and wellbeing, like good communication, should be at the heart of it.

Melanie O’Neill has shared her paper on what she has learnt as the Mum of someone with Autism and as a support worker, in organisations

click here for Physical Restraints Vs Communication paper

What we will focus on and work with our members to make happen

Learning Disability England wants more to be done to end the harm these practices are having on people. We know too many people are restrained or secluded or on medication when listening to them and good support could stop the need for those practices.

We think that

  • the underlying reasons restraint is being used should always be recognised.

For example, if people are being supported badly or in places that cause them distress their behaviour may show they are afraid. For example, environmental factors may mean autistic people are afraid and lead to them being restrained and then more afraid.

We think this is a failure in services, not the person.

  • restraint must be better understood so the difference between a gentle hand on someone’s arm and holding someone against their will is clear and supportive practice and restraint are not counted as the same thing.

 

  • it is never OK to accept fully body restraint or long-term segregation and seclusion as part of someone’s support

 

  • the focus needs to be on the good support practices we know work for people being supported and the staff supporting them

 

  • support staff must get good training, support and ongoing learning on positive ways of working for the people they are supporting now

 

  • no one’s ‘behaviour’ justifies this use of seclusion and segregation. The amount it is used shows how wrong our system of support is.

We want there to be more focus on good community services and support for people to live an ordinary life.

Understanding how people communicate and what they are saying through words, signs, symbols or their behaviour is very important for people to live a good life.

We believe developing community supports with skilled staff will help end the restrictive and damaging practices in situations that do not work for people with learning disabilities or autistic people.

 

We will work with our members to share the good ways of working, help others learn about them and support policy or legal changes that are needed.