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Well hello there. - Carers UK Forum

Well hello there.

Socialise and chat about other areas of your life
Just to say Hi to everyone here.
I haven't been around for the last few years because I have been so busy and not only caring for my son but much has changed in the last few years. I've had a long battle with the services which are on-going. They have taken to stripping services via the total ignoring method. While my son is still 'on their list' he gets no actual service from his consultant or any of the joint solution teams including the social work team who allocate and then just as randomly eject from his case having not reassessed and of course, they occasionally have to justify their jobs regardless of whether they do them or not. I get random phone calls normally from a nurse who I've never met who I'm told 'is allocated' and wants to arrange an aftercare meeting. The last time this happened and was arranged by her no-one but myself even bothered turning up and then, of course, there are no explanations or contact to apologize or explain. It goes on for months and months and that turns into years.
My son is 34 today and is still waiting on a neurologist appointment after being diagnosed with epilepsy some 16 years ago. He's mainly housebound now as he has seizures which have had a devastating effect on his life. There is no way he'll be able to manage to just go to a neurologist appointment at the hospital.
In one respect I am glad the services don't bother as they have been more trouble than they are worth. In another respect, I can't help feeling life could have been so much better for him if he had got the right set of services early on in his life. It could still be better if learning disability teams actually tried harder not to give up on cases like my son's. This service really only assists those with less complex issues. Not to say I accept that, as I certainly don't.
However, on the flip side, he's happy at home and looking forward to waking up to his birthday later on today with his family. Talking of which the family has extended somewhat, I have another granddaughter aged 7-months now and I am a great-grandmother to my 18-month-old great-grandson and around about Easter this year my great-granddaughter is due to be born. How many are that lucky as to get one of each great-grandchild in life, I wonder? Always counting the blessings and there are many...much more than there aren't anyway. :D
Welcome back , Charm.

Since you were last with us , more fires than ever are raging throughout CarerLand ... even buckets
for the non existent sand / water are fetching a price a few of us can afford.

Your own post mirrors that ... hard to see any sector where there is not a fire.

Have a look around , plenty of horror stories to choose from ... especially the NEWS section ... to see
exactly where the worst fires are.

Even less active now ... just a few diehards keeping the forum afloat.
It's time for you to make a "Subject Access Request" (SAR) asking for copies of everything on file about you and your son in the last two years. Ask for it in paper form. They have 30 days to respond.
I am also still battling!
Welcome back Charm
BCC still very unsupportive I see.
I too have become a great grandmother. Great granddaughter has brought light into our lives. Lost hubby in May, and sad he didn't get to meet her. He moved over to make room for her!
Keep in touch.
Welcome back ! my wife (48) also has severe epilepsy. We are lucky to have a care package in place with social services who have been brilliant in our area. I really hope your son gets better control one day. We have a long history of trying various treatments here in the uk, my wife's condition sadly is refractory and it has progressed.

Wishing you a better 2020 and that your son get the care he needs.
Paul
Chris From The Gulag wrote:
Fri Jan 17, 2020 8:17 am
Welcome back , Charm.

Since you were last with us , more fires than ever are raging throughout CarerLand ... even buckets
for the non existent sand / water are fetching a price a few of us can afford.

Your own post mirrors that ... hard to see any sector where there is not a fire.

Have a look around , plenty of horror stories to choose from ... especially the NEWS section ... to see
exactly where the worst fires are.

Even less active now ... just a few diehards keeping the forum afloat.
Hiya Chris, I hope to be coming back more regularly. I know the fires are raging and everything seems to be difficult for carers these days. Where is everybody? I have always said unless we stick together nothing will ever change. It really is difficult to fight the services as a lone cause but people seem to be scared to get involved and be counted even when they are going through the same, I suppose in case they are personally singled out for bad treatment but that happens anyhow regardless. Thing is they single us out anyway by isolating us.
bowlingbun wrote:
Fri Jan 17, 2020 8:27 am
It's time for you to make a "Subject Access Request" (SAR) asking for copies of everything on file about you and your son in the last two years. Ask for it in paper form. They have 30 days to respond.
I am also still battling!
Hiya Bowlingbun, I've already done that SS are ignoring it and have gone months over 30 days and Nhs gave me more or less totally blacked out incomplete files and ignored me when I contacted them about the removal of a malicious statement. They also won't allow me to see anything regarding my son even though it is me who has been seeing them all these years.
Pet66 wrote:
Fri Jan 17, 2020 9:18 am
Welcome back Charm
BCC still very unsupportive I see.
I too have become a great grandmother. Great granddaughter has brought light into our lives. Lost hubby in May, and sad he didn't get to meet her. He moved over to make room for her!
Keep in touch.
Hiya Pet, So sorry to hear about your husband. It is a blessing having a great-grandchild and amazing, it is a shame he didn't meet her. I think it's strange just how in life there is always something going on. I'm so glad she's bought light into your life. I will keep in touch XX
PAUL72 wrote:
Sat Jan 18, 2020 7:01 pm
Welcome back ! my wife (48) also has severe epilepsy. We are lucky to have a care package in place with social services who have been brilliant in our area. I really hope your son gets better control one day. We have a long history of trying various treatments here in the uk, my wife's condition sadly is refractory and it has progressed.

Wishing you a better 2020 and that your son get the care he needs.
Paul
Hiya Paul, Thank you for your kind words and I hope 2020 is good for you also. I think my son is the same as your wife regarding it getting worse. We have to count our blessings though, don't we? I have a care package for my son but it wasn't given from the kindness of their hearts. He's on 117 aftercare and they quote the package to me often and the costs despite it being a forced situation, they caused in the first place.
I'm really sorry to hear of your situation, my wife has clusters of seizures and needs regular rescue medication to bring seizures to an end ,so needs full time care/support, I really hope your son gets some seizure free days?. Epilepsy is so unpredictable for those that are uncontrolled, we try our best to make the most of clear days but they are few and far between for Lisa. Our social services have been really good and we've had a care packing on place for over 15 years, we now have a direct payment where we employ family to look after my wife, with this set up I've been able to continue working. Has your son tried many treatments?

Paul