Katie's Diary

Time to stop the heartache now by Dorothy Jarvis-Lee

27th July 2015

SEPARATING children and parents is barbaric, yet in 21st century Britain it is perpetrated on a daily basis as people with learning difficulties are sent into long term hospitals miles from anyone they know.

In the last two years ubu has lobbied key decisions makers to close these institutions and find accommodation for the people living in them in homes at the heart of their local communities.

We have spoken to Norman Lamb, when he was Minister for Care and Jane Cummings the Chief Nursing Officer.  Both were sympathetic and determined to act, but ultimately nothing has been done and 1000s of people continue to languish like forgotten prisoners in barbaric conditions that are unfit for animals, never mind people.  There is a humanitarian and an economic case and time and again we have been proven right.  

Worse only recently NHS England admitted it will not close these institutions until accommodation has been found for the people still there.  It is a chicken and egg situation, without homes they will remain in these places, while these places are there no homes will be created.

That is plain barmy when ubu is creating homes that are to a high standard and fitted with the latest in technology to ensure that every person we care for ahs access to 24/7 support from trained, skilled carers.

Another major hurdle to high quality care for people with learning difficulties who present challenging behaviour is that they are commonly mis diagnosed.   Often a person with Autism will be diagnosed as having mental health problems and from there it is a downward spiral of the wrong treatment making the condition worse and leading to an even more agitated person who is increasingly anxious and acts accordingly.

That is what happened to 14 year old Josh.  When he was ten he was diagnosed as having mental health problems and because he was a handful and could become violent when upset was put into a hospital.

His treatment has been a series of drugs, injections and restraint.  Rather than get better he was got worse.  Now his parents couldn’t imagine being able to care for him at home

Worse, their work has taken them to another part of the UK and no one has been able, or willing to find a home close to them where Josh can live, supported by carers until his condition improves so he can return to his parental home.

It is an ever decreasing circle of frustration and heartache caused by an original misdiagnoses and followed by poor and incorrect treatment.  And Josh isn’t alone.

Russell is autistic and so is his son.  Russell says the problem is a housing one and added that ubu and others provide unique options, but no one listens because of self interest.

He was incorrectly diagnosed as a young man.  Because his condition was diagnosed as mental illness that was a catalyst for a series of mistakes that compounded his misery. 

Poor diagnosis is causing a financially catastrophic problem that society cannot afford.  People with learning difficulties who resent challenging behaviour should be encouraged to aspire to independent lives in their own home at the heart of a community.  Shutting them away out of sight out of mind does no one any good and it is costing us a fortune.

The Government recently announced it was slashing £12billion from the benefits budget.  If it is serious about improving the lives of vulnerable people and saving cash it is about time it shut these archaic institutions called us to visit our settings and ensured that people with learning difficulties got the right diagnosis.

Find out more about us @ubusupport.

Time to stop the heartache now by Dorothy Jarvis-Lee

 I decide what matters to me. ubu help and teach me to make my future happen 

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