Ongoing issue with CCG. My son's transport's been changed, and day centre hours are being shortened

paulthewatchmanA78

I'm new to the community and I have an ongoing issue with my local CCG .
My son is 25 and has severe autism and global learning disabilities along with Epilepsy and complex medical needs. 
He also displays challenging behaviour that is violent in nature. 
He is fully funded for NHS Continuing healthcare. 
Part of his package of care is funding for 5 days a week at a National Autistic society day centre with transport and a Passenger assistant. 
In June the CCG refused to fund transport on the grounds of cost. I raised a formal complaint which concluded in September. 
Transport was reinstated but with my son's day centre providing transport instead of the usual transport provider. 
The Passenger assistant was removed from the package after a risk assessment was carried out by the CCG . I had no idea that this assesment was being carried out and no involvement in it. 
I contacted the CCG to raise my concerns and was informed that the Chief Nurse had made this decision and her decision was final. 
I contacted her later that day asking her to reconsider on the grounds of safety. She refused to revisit her decision. 
My son returned to the day centre on Monday . We had a severe meltdown which resulted in injury to my son and damage to our home , caused by my son being upset about the new transport arrangements. 
I predicted that this would happen to the CCG and was ignored. 
Another issue is that the Day centre are going to cut an hour a day off of my son's day so that they can meet the Transport arrangements. 
The result of this shortening of his day is that my wife cannot return to  work .
The start and finish time at the day centre were originally in place to allow her to continue to work. 
I am advised that I should contact the Ombudsman anyone any advice? 
Thanks 

Libby_Alumni

paulthewatchmanA78 said:

I'm new to the community and I have an ongoing issue with my local CCG .
My son is 25 and has severe autism and global learning disabilities along with Epilepsy and complex medical needs. 
He also displays challenging behaviour that is violent in nature. 
He is fully funded for NHS Continuing healthcare. 
Part of his package of care is funding for 5 days a week at a National Autistic society day centre with transport and a Passenger assistant. 
In June the CCG refused to fund transport on the grounds of cost. I raised a formal complaint which concluded in September. 
Transport was reinstated but with my son's day centre providing transport instead of the usual transport provider. 
The Passenger assistant was removed from the package after a risk assessment was carried out by the CCG . I had no idea that this assesment was being carried out and no involvement in it. 
I contacted the CCG to raise my concerns and was informed that the Chief Nurse had made this decision and her decision was final. 
I contacted her later that day asking her to reconsider on the grounds of safety. She refused to revisit her decision. 
My son returned to the day centre on Monday . We had a severe meltdown which resulted in injury to my son and damage to our home , caused by my son being upset about the new transport arrangements. 
I predicted that this would happen to the CCG and was ignored. 
Another issue is that the Day centre are going to cut an hour a day off of my son's day so that they can meet the Transport arrangements. 
The result of this shortening of his day is that my wife cannot return to  work .
The start and finish time at the day centre were originally in place to allow her to continue to work. 
I am advised that I should contact the Ombudsman anyone any advice? 
Thanks 

Hi @paulthewatchman                      

How are you getting on?

I'm really sorry to hear your experiences with your local CCG. Has anything been changed or managed in favour of your situation? I apologise that we couldn't find any answers for you and I hope some of our members will be able to share their current thoughts and experiences too. 

If you have any further questions or queries, please just let us know.

Libby