Hi All

[miasmum]

You might not have noticed, but I am aware I am not around as much at the moment. I read and try to support and congratulate but RL is sort of getting in the way. So just to update you

Luke has been visited by the paramedics four times in just over week, two visits to hospitals and twice they have agreed for him to stay at home. His Consultant has amended his Midazolam (emergency rescue medication) care plan to say he must not be left for longer than 30 mins if he is in and out of seizure activity. That was Thursday afternoon, she emailed and rang the manager of his home, but he didn't amend the care plan, nor feed back to staff and that night (that kid has great timing) Luke was left for 60 mins before anything was done. Friday, when we picked him up, the senior on duty still didn't know about the changes and on Saturday his key worker called round with a birthday card and present from Luke for Tim and she didn't know either. Basically they have lied and lied and we have now reported them to safeguarding. As a result they have said they don't feel they can meet Luke's needs any longer. In a way that is good, as we wanted to move him into his own bungalow but with the seizures worsening, we sort of were trying to deal with one thing at a time. Today I had a meeting with the ex-manager who is now registered manager of a care agency and they would be happy to provide care to Luke and she would be happy to give Luke's current key worker a senior role, so that is good news.

On Saturday we went to The National Society for Epilepsy as they will be having Luke in for 3 days for a 3 day EEG (heaven help us) and other testing, and he is also being admitted to the National Hospital for Neurosurgery and Neurology for an MRI with contrast under general anaesthetic on 10th March. So we also have all that to contend with.

Work have agreed I can take unpaid leave to go with him as I have run out of holiday.

As I said I do read and I do try and post but I am a little busy at the moment.


love to you all xxxx

[Osc]

Aw god Shell, life is really laying it heavy on you at the moment. Appalling behaviour by his home, the place where his care is supposed to be their priority You are right to make a complaint about them. We all know that RL gets in the way and is far more important, so you look after yourself and know that we all care very much for you, and Luke of course xxxx

[TheOstrich]

<<MM and Luke>> ...... must all be such an ongoing worry - thoughts for you ...

Ossie

[tonicha]

Sending you all huge hugs xxx

And a brick through the windows of that so-called care home In fact, make that several bricks

[pollR78]

Oh MM what a time your having, *hugs* to you and Luke also, this must be really hard for you. I am glad to hear of the new care agency and they will hopefully make the transition from the home to his own bungalow as smooth as possible.

Hope all goes well with hospital appointments and I will be thinking of you all, take care and more *hugs*

Poll xx

[miasmum]

Be careful with your hit men Ton, Luke's bedroom window is at the front, ground floor Plus the carers are nice, just arrogant manager

Thank you all, hugs gratefully received

xxxx

[lissie]

Take care MM xxxxxx

lissie

[debih]

((((((MM and Luke and family)))))))

[Ally]

Here's a hug from me too Shell.

((((((MM and family))))) xxx

[Kaz]

((((((((((Shell)))))))))))))))) I have missed you very much, but had kind of gathered something of the situation from Facebook, so knew you had far bigger things to concern you

I am so sorry Luke is such a poorly lad at the moment and hope things will improve soon - will be thinking of you and hoping the tests and procedures go well for him xxxx

As for the care home, well I am glad he is going to get his own place and be cared for by someone you can trust!

Lots of love, K xxxxxxxxxxxxxxxxxxx