Time to post the events of the last few weeks, it has all been very odd and difficult this month, But I have learned quite a few things. We've been dealing with the fallout from all the problems I've posted about in previous blogs regarding care assistants, the unreliability, unsuitability and general bad practice by the service provider. That problem has been resolved, for while anyway. But it took a lot of assertive or demanding telephone calls on my behalf. The most annoying part of that episode was biting my tongue when I was being told that they had found a solution, when all they actually did was uncross some of their wires and do what I suggested they do in the first place! Frustrating though it may be, there is no alternative available and I don't want to rock the boat too much. I'm not fond of the idea of being the dreaded voice on the other end of the phone associated with problems, that is not going to help Sarah in the long run.
It had been decided at least 4 years ago when Sarah started to attend the Day Centre for 4 days a week that approaches would be made to Psychology regarding some of Sarah's more aggressive outbursts, meltdowns, behaviors or whatever you want to call her expressions of sheer frustration when routines get tampered with and the people she is told will 'be there for her from now on' are no longer there. Basic autism issues. As various professionals have succeeded to a point with Sarah, speech therapy for instance, who were a great help with their 'social stories' which we continue to use and are very helpful, they all come to a place where they cannot proceed, and suggest psychology is the next place we go for help and advice. Some, my GP for instance, cannot understand why I should be asking for help regarding coping strategies for Sarah and ourselves when she is in one of her darker moods. Of course they are not living on the side of a volcano, some have only seen Sarah on her best behavior, most people don't think Sarah has a bad side, but seeing is believing and some just don't see. I am of the opinion that the correct approach, whatever that is, when she is at her worst makes the bad times shorter and good times, when she is a pleasure to be with and really good company, longer.
So to cut a long story short, I have been trying to get a referral to psychology for some time now. The problem has always been getting past the care manager, because Sarah has learning difficulties any referrals have to go from source to the disabilities team, to the individuals care manager and then to the department needed. I'm sure I've blogged before about the lack of psychologists in the Cynon Valley so I won't bore you with that, in a nutshell, we are one of the most deprived areas in Europe, let alone the UK or even just Wales, it appears we have a massive problem with alcohol and substance abuse, which is of course dealt with by psych. so they are spread thinly.
Each time something happens with Sarah in the Day Centre that they feel needs to be addressed they contact the care manager, she says she will contact psychology, and that is where it stops. So, a couple of weeks ago I saw an opportunity which I just couldn't resist. I was in the surgery for my usual six monthly blood pressure check and renew the prescription consultation with the Practice Nurse. She asked me how Sarah was. So I told her. She couldn't miss the bloody great bruise on my arm as a result of deflecting yet another attack with a TV remote. (See previous post!) By chance the other practice nurse who deals with the psychology patients...i.e. the junkies and alcoholics in the main, was in the surgery. She called her in, I told her the problems we were having at the moment and she proceeded to tell me there was a new man at the head of psych. and she would get on the phone too him/his department as soon as her clinic was over. This is the most positive thing to come out of this wretched surgery, I wished her luck and went home and tentatively passed the on the news. That was three Tuesdays ago. Three Thursdays ago she phoned me to say that they had taken her referral, but had to refer back to the care manager as it should have come through her. I thanked her for trying and we both wondered where it would go from there.
Well, where it went was quite interesting, later the same day I got a phone call from the care manager who was clearly very pissed off with me, asking what was wrong and what did I think I was doing talking to a nurse practitioner? I told her the truth, that it had come about because of a general chat in the surgery and it was considered worth a try since other approaches had not born fruit. She was not happy, but said she would approve the referral, which left me wondering wether she had even bothered referring in the past. The next day in the morning we had a call from the care manager saying we would get an appointment to see a doctor at psych. within three months. Ooh, a result, we were quite pleased. Monday morning this week brought a telephone call from Psych. saying if I didn't mind such short notice, they could manage a house call the next day. I was rendered speechless. Then I managed to say that would be fine.
Now finally we have a result after years of wondering, asking and getting fobbed off with excuses, Psychological services, in the form of a brace of real psychologists and a clinical nurse, turned up on our doorstep exactly when they said they would yesterday morning. We went through Sarah's progress from conception to yesterday lunch time, pages of notes were taken, we were asked about our thoughts and actually not talked down to, which is first, senior chap chatted to Sarah as an adult, another first. We now have to keep the inevitable diary, not difficult as we have a communication book running with the day centre and believe it or not I keep notes, just need to refine them a bit.
We're not expecting miracles, just a fresh look at how to deal with the more violent outbursts i.e. the stuff that is going to get her into trouble if she isn't careful. Senior chap told Sarah he was going to help her with her temper, and he would come and see her again at home and at the Day Centre. I'm still slightly stunned by this, also a bit concerned about Sarah's care manager, who I am now having doubts about. I am aware of problems within social services care management teams, but I always thought she was pretty good, I quite like her and don't really want to think badly of her, hopefully we will get past this with no bad feelings.
So what I have learned this month is that being assertive on the telephone gets results, proof being that Sarah is at this moment at an Easter party at the Gateway club I was assured was too far away for her to go to a month ago. Also that if you talk to the right person things can happen and don't have too much faith in your care manager. I've also learned that statins are not all they are cracked up to be and are probably best avoided, the GP is is probably the least effective member of the local surgery, I am a year older than I was last month and it is possible to lose your lovely Sony Ericson W705 but get a new sim for a horrible old Samsung D600e with the same number so I don't have to give everybody a new contact number for me, and more importantly, I don't have to learn a new one. The most recent thing I have learned is that slugs are active in our greenhouse....
