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Another Newbie - Carers UK Forum

Another Newbie

Tell us a bit about yourself here.
Hello everybody, im another newbie to carers uk, ive been reading round for a little while.

Brief introduction.

My partner and i have a 5 yr old son who has cerebral palsy, aqquired microphaely, and has recently been diagnosed with the last 12 months with evolving epilepsy, we have emergancy medicine for his prolonged seizures which were very scary i have to say! Over 2 hours long and having to call an ambulance and a stay in hospital with him, he also had for a few years a subluxed hip which has now completely dislocated and the surgeon is wanting to operate within the next 4 months. Things are very difficult as weve never had any help, we eventually after two years of waiting on the social housing list and being messed about moved to our new house 80 miles away closer to my family cause we were let down by nhs where we lived previously, and everything seems to have gone to pot again, we dont even have a social worker although been registered with one for over 12 months now, our son has in sept last started special school, that was part time and now its full timebut barely been to schoolcause everytime he does they pass a cold on or a stomachbug and our son is at risk when he has a cold of having a seizure, so wehave to be extra cautious.

There really is too much to type here other than we are waiting on adaptions here, 3 bed house because their two beds werent big enough to adapt, so now on top we have the bedroom tax to pay! And his dads the main carer although we care as a couple, he needs our spare room to beable to moniter our son as we have cameras and i need our bedroom to get sleep for the daytime shift. School is a pressure in itself as they dont seem to be listening and just saying hes having alot of time off, yet the staff are going in full of cold and im afraid his time off is their fault,not ours,wejust dont need it on top of everything else. The surgeon needs the council and housing to get this house adapted, we dont even have a driveway and have to carry our son down the road to the car all the time, and he cant operate til he has adaptions in place and they have been dragging their feet, the housing due to finance.
Anyway i shall stop there for now lol

Good to meet you all.
I just commented on our other post Claire. Welcome to the forum.
Hi Clare, you'll get a lot of support and info on this site, welcome Image
love Phoebe x

ps just a thought, could you arrange a meeting with the school and social services so that the school understand the full importance of your son'd condition?

good luck x
Thanks for the warm welcomes everybody, very much appreciated, trust me i am a forum user and not all people respond, so you end up feeling alone, plus i have my own forum but thats a different subject altogether Image

Phoebe thank you for your suggestion but unfortunately school cant even get hold of our social worker, so theres no chance, we are used to fending for ourselves and im like a dog with a bone where my sons medical and welfare are concerned lol
Hiya and a warm welcome to the forum. Is there any chance that you might be able to get camhs involved and maybe they could add some weight to the relevant professionals, also worth concacting your local MP about all your problems.
Welcome to the forum Claire
Feel free to join in with any of the discussions, join in with the chat on Roll Call or just have a good rant.
BTW there is an extended thread that has become a discussion/support thread for those of us who care for people with epilepsy if you wish to join in. Epilepsy can be very scary when it first starts and you are just finding your way
viewtopic.php?f=6&t=18528
Thankyou both so much Mum1 and Crocus Image nice to meet you both.

Ive heard of Camhs but i cant remember what it is? Lol.... Unfortuntely i have little faith in anyone these days, even some of the charities the people who are meant to be helping you, i feel let down, even by school to some degree, lost my trust, a few years ago when we needed help then and we were living 80 miles away from where we are now, away from my family my parents on my behalf went to a local find out day as we had just gone on the waiting list for a house to move county closer to my family, anyway they said they got talking to a few lovely ladies and told them about our predicament, which i couldnt remember what it was at the time lol.... Been fighting everybody for far too long now and have only got where i have today by doing peoples jobs for them and basically chasing everyone and coming across things accidently on the internet, had no support whatsoever and people promising to help, professional people and then never hearing from them again or being able to contact them, anyway this particular one i was talking about mum told me she really sounds like she cares and wants to help with our situation and that she would contact me, anyway a few weeks went by and give her her due she did email me and asked me to send some details abour or son before she could do something anout it, the first reply i sent back she answered needing something else, then she didnt respond, so i emailed again, nothing and again, nothing, tried ringing, nothing, just disappeared off the planet!!! At times i thought maybe she really has disappeared off the planet, god forbid! But makes you wonder,,,,so that never happened and i never heard from her again.

Then when me and my son were temperarily stopping with my parents waiting for a house, we went to a disability kidz up north event and got talking to a charity there, lol might be camhs im nit sure! It will come to me, anyway i spoke to the local manager for the area and she sat with me for ages talking about me needing a carers assesement and the housing situation and sons care saying she could help with this that and the other, anyway she took my phone number and promised to ring me in a few days time to discuss further action, she never rang, weeks went by, i never had her phone number as she promised she would definately call me or email me.....still waiting 3 years too late!!

Crocus you shouldnt encourage me to rant! Lol
And sorry to sound negative again Mum1 our local mp is a waste of time thats another person that promised to help our situation re the welfare of our son and our housing situation and nhs care etc, she did write a letter to our housing but completely got the wrong end of the stick and asked the wrong questions, then she went on sick leave...i tell ya, if you want a job doing, do it yourself!!! Ive even had the housing arguing with me over the phone, their attitude really stinks and the managers arent much better, they eventually listened when i threatened going to the papers after having a paddy in the front office and walking out saying im going to the papers at the too of my voice! Lol...i was very upset, exhausted with it all and angry....

Thankyou crocus for pointing me in the direction of the epilepsy part of the forum, thats something else weve been left in the dark with as the epilepsy nurse is next to useless to be honest, not supportive at all.
Welcome to the forum Image
Welcome to the forum. I'm not surprised you are tearing your hair out, it's difficult enough having a child with special needs without all the extra aggravation. My son has SLD and I had to fight for years for all sorts of things, so I really do know where you are coming from. One thing is clear, every service appears to be operating in splendid isolation from everyone else, and you need them working together. Social Services should be the key to this. I have found that the only way forward is to make formal complaints when you are being ignored. Write everything using a computer, keep copies of everything. If the local office won't do anything, the complain to the County Hall, or whatever it is called in your area. (Whilst it's not a good idea to give your exact location, if you said which County you live in someone might have knowledge of some local services). Do the same with Education and Housing. File letters away with dividers, one section for each service. If you phone someone up, make a note of who you speak to each time, BEFORE you have a conversation. Ask them if they have an email address, so that people can email you - I've used the excuse that I don't remember everything if I'm stressed. Then you've got a copy which can be forwarded if neccessary. If you are not happy with someone's attitude to you, just say "Please may I speak to your supervisor?" and if they say there's no one available, don't believe them! Just keep insisting. Good luck.