Nice registration

[Tracidu]

Hi , does anyone know if I should register with NICE for my son who has severe learning disabilities and is 37yrs old and lives at home with me ,

His care agency has let us down again this morning so he cannot go to the farm which he loves today .

I got him all ready for his transport this morning and he was excited to go out . There is no empathy from people who are supposed to care on how it effects him ..

While looking at care websites I came across Nice but I couldnt make out what they do and whether we should be registered with them ?

If anyone has any information it would be appreciated.

So tired of agencies letting him down . Just another stressful day

[Jofisher]

Hi I feel for you as I used to work as a manager for a community support worker company and we used to provide care in the community to people like your son. Unfortunately the staff I had would often let me down then I would have to tell poor families like yours we couldn’t provide the care they had booked I used to feel awful as I know how important it is to families. In the end I left as I couldn’t deal with the unpredictability of it for my families. I would suggest you speak to the care quality commission and make an official complaint to the care agency and to the people who pay for this service as they’re not keeping to their end of the contract.

[Tracidu in reply to Jofisher]

Thankyou for your reply, It's very upsetting to see my son all ready to go out to his farm and doesn't understand why he can't as the farm won't have him there without one to one support which the care agency supply ,

They have done this before and said they would make sure he has support cover if his usual carer is off which hasn't happened yet again ...

His contract with Mencap was terminated earlier this year for Saturday support for a LD sports club .. it was out of the blue , the carers were very good and enjoyed having my son , they were upset when this happened , I havnt been able to get a new agency to take over so I do not won't to be left without support again if I complain ..

I feel carers are in a difficult position to complain as we are at thier mercy which is very worrying for his future when I an unable care for him alone as I do now .

[Jofisher in reply to Tracidu]

CAn you employ family as I did I employed family members as they’re less likely to let you down. You could manage the budget yourself get an organisation to do the pay role side of things and you employ the carers it might be worth you looking into doing that. I feel for you it’s no joke for you or for your son who as you say has no understanding of why he can’t go very sad indeed

[Tracidu in reply to Jofisher]

Thankyou for your reply , that's very interesting, I was always told I couldn't employ family members which would be much better for him .I will look into it , thanks again

[Jofisher in reply to Tracidu]

I was able to it should be whose best for your son but I couldn't employ myself and neither would I have done

[HolisticMum]

If they are not living with you this should be ok. Who would know if they are family and could be friends!!

[Tracidu in reply to HolisticMum]

Thankyou for your reply , I will look into it ,

I am going have to be look for residential care soon which fills me with dread ,

[49Twister in reply to Tracidu]

I would encourage you Tracidu to start the process now, as this will take some time and will help you and your son come to terms a little easier with the transition. I know it’s not easy but is something we all have to face, and much better to start planning now while your still reasonably fit and not in crisis. Once your son has been assessed they will have to look at what is available in your area. Try and get somewhere close by so you and your son can visit each other when you want and also you can keep an eye on things. You don’t have to accept somewhere you feel isn’t right for you both, you shouldn’t feel under pressure, and it will give you an insight into what is out there. I wish you both the best of luck.

[Tracidu in reply to 49Twister]

Thankyou for your reply. It's very hard to let go , especially his needs that a lot of people don't understand and also I like him to look clean and well dressed and most 0laces he's been to over the years has left him in a terrible state when he comes home , I get cold feet everytime I think of it , I must really start the ball rolling now as I'm now getting too tired ..

[49Twister in reply to Tracidu]

I totally agree they aren’t looked after well enough!! I still have to keep reminding staff to trim his beard etc. First time he’s had a beard, Covid’s fault. He wasn’t coming home as much so grew a beard, but they don’t seem to get it needs trimming regularly. Don’t let this put you off though, I’m 73 and know I couldn’t do this full time. I just keep at them when I need too, while I can. You just might be lucky enough to get somewhere with really good staff, I hope so.🤞