Today I spent an entire day trying to determine what was going on with Elizabeth’s referral to another team. Nothing seemed to go right today and nothing was achieved but it is very effective if you go in person to these offices and to the GP in order to get things sorted.
First of all I visited the GP surgery and enquired how the referral was progressing. I was told the referral had been made to Learning Disability/Autism Team based in the town. I then visited this team and advised they knew nothing about any referral. I requested to see a duty social worker but whilst waiting, the receptionist was really helpful and advised that the GP had failed to return a form necessary in respect of the referral. She gave me the form which I commenced completing, leaving parts for the GP as, after all, the referral was from them. It was suggested I include relevant information I had so I then returned home and searched through the extensive records until I found the opinions of other professionals disputing the diagnosis of “paranoid schizophrenia” and stating LD/Aspergers. Under this team there seemed more support than what was on offer under the mental health who are providing nothing, despite producing a care plan stating incorrectly that Elizabeth was receiving assistance in budgeting, and numerous other areas which was not the case. Whilst doing all this running about I was waiting for the Council’s heating and plumbing engineers T Brown to call me to say they were approaching Elizabeth’s flat but now it was getting late and I still had received no call from them. So I contacted them on hearing they turned up and put a card through the door once again and this was the fourth time they had not acted upon instruction because I had explained that someone needed to be with Elizabeth when they visited. Elizabeth now has to wait until the 20th and I wonder if the same thing will occur.
Due to no support in the community things are bound to go wrong like this but it has been stressful and on my day off not once have I had the chance to do anything other than run around chasing up appointments and things that had not been done.
I returned to the GP surgery one more time and presented them with the partially completed form and other papers to accompany this but the GP’s admin staff were not prepared to take a copy of about three pages so I asked to speak to the manager and the admin assistant told me she had suddenly left the premises.
Then came the numerous phone calls from Elizabeth who was distressed as she had been out in a crowded place which had affected her. Sometimes out of fear she will react badly to certain situations such as the recent blood tests. This is why she needs a support worker so if the team (Enfield Community Rehab) cannot provide any support then clearly she is within the wrong team. To place someone like Elizabeth in the community with nothing is negligent.
I was so fed up that I visited solicitors – community care solicitors as no one is taking any notice and this whole situation has been dragging on since July. I am the one who is doing all the things the care coordinator takes credit for. I am the one helping with the shopping, trying to ensure her account does not go overdrawn in the absence of any necessary support in budgeting. I am the one who took her to the blood test but we had to leave as she got in such a state. I have not had a chance to see Elizabeth today as I’ve been so busy trying to sort out the non-existent community care and driving all over the place to see what the latest position was and requesting a referral to another more suitable team.
Enough is enough and I feel she should be with the other team but I have come across some extremely helpful staff today. After I had returned to the LD/Autism offices and presented them with additional information that the GP surgery refused to copy, I noticed some leaflets. I was reading one called “Shared Lives”. This seemed to be a very good project so I telephoned them and again they were very helpful suggesting that Elizabeth could be re-assessed by the Adults social care team. I would be happy if there was a support worker just twice a week – that is not asking too much. When they say S117 Aftercare is being provided – what aftercare exactly? Aftercare is in my opinion an assistant who can accompany Elizabeth out shopping, appointments midweek. What good are assistants that just remain in the home as in supported living/housing. The only thing that Elizabeth needs is someone of her choice that can support and help her attend appointments. Even getting on a bus is stressful and lack of understanding/communication skills complicate matters further.
Now the heating cannot be looked at until the 20th Dec. I am going to have to chase up the GP and check to ensure they have this time dealt effectively with the referral.
If I found this day of running around, chasing up things that should have been dealt with stressful, then how is someone like Elizabeth meant to cope. Total lack of communication can arise and there should be good communication when it comes to dealing with people like Elizabeth.
None of these incidents would have arisen if Elizabeth had been allocated a support worker who MUST have experience of Aspergers/LD in order to be able to communicate effectively.