Good news! Things are progressing in the right direction all be it slowly. The LA are starting to do some of what should have happened several months ago. We will share when it is safe to do so.
The sad news is, our story is not unique. I have many friends going through the same or similar thing up and down the country. So what is it that we want?
Most of us realise our beautiful children have life limiting conditions which will probably mean that we will outlive our kids. What we want is for our kids to be happy, loved and supported for the time they are here. That in our case is Rohan lives at home where he is adored and expertly supported by a consistent team.
Put yourself in his shoes for a few mins while you read this. You are 21, have lived with your family all your life, that is all you know and what you regard as safety. You love your home and people who are familiar with you. You love running and being outside. You love eating mum’s home cooked food. You can’t talk, you can’t feed yourself, you rely on every part of your life being anticipated and your subtle communication interpreted by people who know you well and have patience with all your “funny” behaviours. These by the way are your coping mechanisms; this is how you cope with your complex medical needs and sensory system.
Then the LA/ICB create a pack of lies about your family and are successful, they get a court order to move you out of your home, you can’t tell them you don’t want to go. You cry but your family are powerless they either take you or the police are ordered to. This is called a Best Interest decision (BI).
You arrive in an alien residence, odd smells, odd noises, strange décor, there is too much to process. No one you know, no one to give you love/ hugs, no one who understands your subtle language. Your family leave, holding back their own tears. You are stressed not knowing what people might do to you next, even in your own home you had bad experiences, but your family were always there to stop any abuse, you feel sick and can’t eat.
This for Rohan would mean his seizures would escalate very quickly within 48hrs. Some people say one minute of a seizure is like running a mile. Rohan was stressed last week and was having 5-7 seizures every night averaging 2-3 mins that is like 10-21 miles of running every night – Rohan had a whole week of this last week when a new company came in. The new “home” won’t use mums learnt methods to help you regulate the seizures, the only way to stop an escalation of seizures is strong sedatives, which disable you from bearing weight, you can’t stand or walk for days. When it gets further out of hand it is hospitalisation, even stronger sedatives to stop the seizure activity. You have an aspiration pneumonia from inhaling your own saliva, if not treated quickly it is fatal. So now you are exhausted and bed bound for several days, possibly weeks.
You have low muscle tone, so now the walking and running you did and love feel almost impossible, you can’t even bear weight. Mum isn’t there 24×7 to help you rehabilitate you, like she was every time before. You are now bed bound at the mercy of carers from the home who don’t know you.
The staff in the hospital and “home” don’t feel comfortable feeding you. The LA make a BI decision again, their solution is to fit you with a PEG (percutaneous endoscopic gastrostomy). This allows liquid food to be injected directly into your stomach. You lose your ability to eat, drink and swallow as the muscles degrade. People don’t use the PEG correctly and you end up with more aspirations, infections in the PEG. You have multiple courses of antibiotics, to the point you are now prescribed them as a precautionary measure. This makes you feel nauseous, amongst all the other side effects.
You are moved back to the “home”. People come in and “deal” with your care needs, you are not a person you are a “job to do”, they chat to each other while they touch every part of your body without warning or informing you. You feel so vulnerable, no one to look out for you. No one to protect you.
Your right to live at home – GONE, your right to move – GONE , your right to eat and drink – GONE, your right to be loved by your family – GONE, Your right to dignity – GONE. Your families right to make decisions – GONE, it is the LA that makes the BI decisions now.
What is there left that is worth living for?…
This is not fiction, sadly I know many families who have gone and are going through this. Families are left powerless, the LA exploits the law, the public purse at their disposal, businesses who are totally reliant and subservient to the LA/ICB’s orders… this is going on up and down the country and YOU as a tax payer are funding this abuse of power, the CEO’s of LA’s/ICB’s on £250k+ down to the Social workers, with many levels of management in between driving this to happen. YOU are funding the very wealthy law firms squashing these parents trying to protect their kids with their life savings. YOU are funding these residential homes that are making money from this illicit business. Our MP likened this to the Horizon scandal… I think it is bigger!
