The second in this series of ‘Tales from the community’* features Jane’s fight to try and get her adult son’s care provider to engage with her and involve her in decisions around his care. Peter moved to a shared home with 24 hour care in 2001. Jane was excluded from decisions around his care. A Best Interests meeting was held in 2009 in which it was agreed that Jane should be involved in decision making for Peter. Two years later, still excluded, Jane applied to the Court of Protection to act as Peter’s deputy in decisions around his health and welfare. This led to no change on the part of the provider who continues to exclude Jane.

Jane then attempted to change Peter’s provider:

“So last year in December, I applied again to the court and somehow the provider and commissioners persuaded the Official Solicitor that as my son was autistic, he would not cope with change. So he had to stay BUT I had yet another court agreement saying everyone had to work with me on decision making as before.

Well here we are less than 6 months into this agreement, I have just found out that sometime last year my son had a new tenancy agreement and landlord which I knew absolutely nothing about. Also my son appears to be very short of money due to his benefit money being spent like water by staff over a long period of time, again without discussion with me.”

So what is Jane being excluded from? Here’s a couple of examples:

“From 2001 through to when I first took legal action in 2008, not one person involved me in contributing to Peter’s annual care reviews. A care manager told me later in 2010, “we did not know about you””.

 

Peter was rushed to hospital late one night, “supposedly injured due to falling from a seizure. No one told me about it until 9am the next morning. The staff member involved left Peter, who is autistic and without speech at the hospital alone from the early hours. He was left traumatised for a long time after this by being totally silent. He usually vocalises by “grunts”- poor man, I felt like I had let him down. No one spoke about this after. No enquiry, just pretend it did not happen. No voice, no choice… just put up with it.”

Jane has complained to the provider, to the local authority and to the CQC (the latter are taking forward Jane’s concerns, the former two are bouncing the blame between each other).

Jane ended her email;

“Sadly the money just runs out when dealing with these people, and quite frankly several thousands of pounds and two court agreements later they still can’t get it right.”

*These tales are presented without comment from me (which is proving harder than I thought). Names are changed. Other tales are also being told elsewhere… For example, you can read about Chris, about David, about Claire and Steven Neary. Here’s hoping that the public recording of these stories leads to some change, somehow. Positive tales are, of course, very welcome.