The long-term reality for people and their families

Like a lot of others, people connected to Learning Disability England have been talking about the Panorama Programme that is on tonight.

We all think it is going to be a really hard and distressing programme to watch. Some people have said they will not watch it tonight but maybe on catch up later when they can watch with others. Some people have said they feel they must watch it and face the reality of what is exposed.

It feels important that staff in services, decision makers and politicians keep being reminded that even if you or your family member do not experience direct abuse the impact of poor care or being disregarded by the people supposed to help you leaves a long-lasting legacy.

The Challenging Behaviour Foundation have information and resources for families if they think their family member is not being cared for properly or coming to harm. Find them here

One family member has shared their experience and feelings on hospital support with Wendy Burt, one of our Representative Body members. She asked we share it as it so please read her blog below. Her family member is out of hospital and getting good support now.

“I have been thinking a lot about ATU’s and from various posts can see that people are preparing themselves for the programme on Wednesday. As a Carer I would say that when your child /adult whatever the age is unwell and needs care and support to recover you are thrust into a system that does not offer the therapeutic support and environment needed. You are faced with a clinical system and in some cases with Psychiatrists in Private Units who see pound signs for each day that they keep your child locked away.

By putting someone who is demonstrating behaviours described as challenging into an unpredictable environment you don’t support recovery you just increase fears and anxieties which then impacts on more behaviours coming from the increased fears and anxieties. Lack of well trained, understanding and caring staff greatly impacts on positive recovery for each individual which often leads to inappropriate restraint which again can increase the fears and anxieties of the person.

The total attitude towards our young people has to change because everyone of us deserve access to appropriate help to recover when we are unwell and not to be locked away and forgotten suggesting that such lives have little of no value.

Not being able to protect your child whatever their age can make you feel desperate. Knowing that you are having to trust a service that should be there to support and help your family member but knowing that they are being failed and you have no power to do anything which creates an ongoing pain that affects each moment of your day. Having a family member taken and locked away brings an ongoing sense of loss to all other family members and friends. Knowing that each time you visit and have to leave your child behind is heart breaking and creates a feeling of desperation that never leaves you.”