Let’s get on and grasp the nettle … Transforming Care for people with a learning disability & their families Viki Baker - Care Group Director, Learning.

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Presentation transcript:

Let’s get on and grasp the nettle … Transforming Care for people with a learning disability & their families Viki Baker - Care Group Director, Learning Disability Service May 2016 Janet Jenion – Parent/ Supermum

“ It takes a scandal for people to take notice ” (Bubb, 2012) Five years on since Winterbourne View Loads of documents, data, media, promises It’s great stuff – but what does it really mean? “Our story through the eyes of Lucy”

When we fell over the cliff… Lucy has a severe learning disability Loss of skills All okay until 10 years old when everything changed Severe challenging behaviour - Massive impact on all of the family Eye poking Skin damage Speech Continence Self care Self harm: Aggression: Pulling hair out Biting Hitting Kicking Unhappy: Rocking Pacing Acute distress

What helped us through an awful time… Family Intensive Support Service (FISS) – “the cavalry” They were there and listened Hands on help with Lucy Were “with us” in the crisis and our distress LD child psychiatry – when appointed was/is brilliant

FISS Created a team around us Education Autism & LD Specialists in London Respite care Local Paediatrician Neurology MH & LD Specialists in London Team Around Us

Sharing our nightmares Took 18 months of hell Our crisis service was ‘999’ No advice regarding ‘safe handling’ at home Months of hospitalisation out of area: London Birmingham Woking Lucy’s communication difficulties and learning disability meant phoning difficult She didn’t understand, scared, very unwell Heart breaking Feel sick thinking about it separation was terrible

Skilled staff support Specialist integrated support to families of children (currently mixed eligibility and postcode lottery) Personalised care and support options Ramp up work in prevention and quality assurance Pathways between child, adult learning disability and mental health services Crisis response - integrated, home based, wrap around, 24/7 Keep people with a learning disability local - Learning disability - Mental health - Physical health Staying on top - what her experience means for us

G e t o n a n d g r a s p t h e n e t t l e