My 1:1 post diagnostic support isn't exactly hitting the mark. I accept it isn't the same as counselling but I expected some strong practical ideas and my expectations may be too high.
I have 4 1:1 appointments, commissioned by the NHS with a local charity. So far they seem very structured around what the support worker has to impart - showing me a few videos, telling me about autism, checking which of these factors related to me and chatting about their own family experiences. Pleasant enough but i am desperate! To me it feels as though this worker has maybe been on a short course to deliver very basic information and some thoughts on autism, perhaps designed to allow the individual to process some of their thoughts on their diagnosis. I, however, wanted to use the diagnosis as a key to unlocking advice and guidance on dealing with the effects of autism in my family, improving family dynamics, maintaining a benefits claim for someone who won't interact with services (incl. GPs) and supporting my adult sons (with social skills and possibly further education and work - on the more distant horizon). At the last session I explained my position and the worker seemed to zoon in on me feeling guilty, as if that was mainly what I was conveying. I'm not sure i do feel guilty, although i do have some regrets. I wish we'd known we were an autistic family then I could have enlisted help sooner, of course. But now I simply want to make up for lost time by enlisting appropriate support for my family.I want the worker to stop showing me videos and describing autism to me - i've already read extensively and seen most of the videos too. Also to stop sharing personal anecdotes - I'm not an uncaring person but this is MY time. Could they do perhaps do a quick 360 degree assessment then focus on the challenges I actually face? Would it be reasonable for me to ask this? Or is this actually all they've got and i would be being rude? What should post diagnostic support actually look like? i'm not sure I know. i do know that my situation is apparently complicated by me interpreting my diagnosis as more of a family diagnosis rather than simply an individual one (not without reason as I only put myself forward for assessment in order to better understand what has been going on in our family for generations plus my younger son already has an informal diagnosis and my older son has just been diagnosed too). Overall, shouldn't this be about my support needs rather than what they imagine will generally be needed? Maybe I should take my own 360 degree interpretation to my next meeting and see what the support worker makes of it?
Having recently been assessed for support, I found they are only really interested in 'supporting' (manipulating and abusing) very low functioning people. Anyone with a bit of brain is too difficult for them so they just fob you off with no real effort applied. You just get put in the 'too hard' file.
They really don't want to have to earn their money or face someone who will call out their incompetence - and they will work VERY hard to avoid it..
This hasn’t been my experience and I am by no means an easy case, in fact, I’ve told my job centre worker several times, she definitely deserves a medal for how she is with me, in fact, I’m always horrible, argumentative and down right rude when I get a new support worker, to start with, as it takes me a while to warm to them, but they have all seen beyond that and the relationships have really grown. All my support workers I would say have worked VERY hard to support me. My job centre worker has definitely gone over and above what could be reasonably expected, as have all my workers really. However I was in desperate need of help and I am always honest and open with them so maybe that makes a difference and I am always grateful for any support I am given, whether it helps or not, people can only do their best and I am always grateful for their input, even if it doesn’t work for me. My psychiatrist who doesn’t normally offer after support has also been amazing. Whenever I phone him he gets back to me and he always sees me. He gave me his mobile number as he said he was easier to contact that way rather than going through the receptionist. He even answered my call when he was on holiday, and he spoke to me and gave me an appointment for the first week he was back at work. I have had support workers and doctors etc that couldn’t help me, in the past, and I was grateful for their honesty and input. Just because they can’t help me, it doesn’t mean they’re no good at their job or whatever, it just means they couldn’t help me and I am always grateful that they try.
Maybe you have to be open minded and really need support to get it?
Their 'support' is to want to medicate me and, due to a brain injury that has been extensively investigated, is to refer me to the senior citizen memory team. Total waste of my time and their money - but it looks on paper like they are doing something..
They've also suggested that I join various support groups - that I'm already a member of. Useless.
Why do you expect them to be competent and truthful? How many people do you know who are truthful and competent all the time? And why do you expect them to be flexible and to have the capacity to help people with challenging situations? I think you are expecting way to much from people, you really do hold people in high esteem if you expect all this of them. Most professionals, and especially doctors and nurses, are trained in a specific way, we haven't yet reached a point in our human evolution where people are able to sort other people's s**t out effectively every time, but we're working towards it, we're just not there yet and remember the NHS is built on ill health not good health so they only have answers for ill health which they are taught can be solved with medications or operations.
Ticking boxes is a relatively new thing and is designed to make sure the workers don't miss anything, and it helps lots of people, but not everybody and not the more complex cases. There are thousands of people doing jobs they're not qualified or capable of doing, that's just the way it is. I guess we haven't got enough human beings who are consciously awake enough yet to do a better job. Why would you be jealous of anybody doing a rubbish job? I'm sure you could do the same if you put your mind to it. Don't be jealous, if that's something you would like to achieve, go for it.
Why do you think it's a curse to see straight through people? It's funny how we're all different because I see it as a gift to not only be able to see straight through people but to tell them so as well, I love it, I see it as a gift. I don't think I could ever see myself as a curse.
This has also been my experience in other areas of NHS mental health services. There is an over-reliance on pharmaceuticals plus on rather rudimentary CBT/IAPT-style therapy (you know when you've been PHQ-9ed). There seem to be fixed pathways and if you have a little knowledge this becomes rather obvious. The KPIs are probably to see you within a certain timeframe, complete basic paperwork, prescribe and discharge (sometimes without even informing you you've been discharged).
To be honest, if i hadn't been seeking an autism diagnosis plus post diagnostic and family support specific to that I would have let it all go by now. Gardening, chocolate, a good chat with a close family member, sharing a bottle of wine and stroking the cat have all proven to be more therapeutic.
I expect competence from anyone being paid to do their job. From plumbers to heart surgeons - feel free to accept incompetent work and let me know how that goes for you..
JennyButterfly said:There is an over-reliance on pharmaceuticals plus on rather rudimentary CBT/IAPT-style therapy
They don't even bother with doing CBT with you now - they just send to a link to on-line CBT that's got nothing to do with the issues. You're 'cured' and discharged if you complete it or not.
And i think this is a reasonable expectation. They will have a professional code of ethics and standards to which they should adhere and NHS workers will probably be paid at least a Band 5 or a Band 7 for more complex work.
Unfortunately too much time and effort has been co-opted into one-size-fits-all, watered down versions of real therapy and the funding just isn't there. Given the caseloads they have, their work will probably be very diluted on that score too.
I think my own approach, once the dust has settled on my diagnosis, will be to seek out private therapy from someone well versed in autism issues.
Don't get me started. "Beat the blues" or something based on Chris William's 5 areas? :( i once got a very decent referral to primary psychology and got an excellent formulation of my issues and situation. I was really looking forward to beginning some real therapy but the waiting list was 18 months and, before I got to the top of the list, the service was decommissioned! At this point they said they'd refer me to an "equivalent service" and, ignoring the fact that my referral was for longer term psychotherapy, referred me for 6 brief CBT sessions with the local IAPT service. I nipped this in the bud at the stage of the telephone assessment as both they and I knew that it would be futile.
I've concluded that in reality, I'm not going to get any help from them. Time to get the chocolate, wine and a cat.
I don't accept incompetent work from anybody, not ever, and rarely do I get it but I don't expect it. I am world wise enough to know that there are plenty of people doing jobs they either can't do, won't do or don't want to do, even people on here, I have heard say they do the least possible at work just to get through the day. I hear people all the time saying they hate their jobs etc, in fact, apart from myself, I know very few people who do only what they love doing in life so it stands to reason that there are many many people in jobs that they don't love, so they're never going to give their best when they don't love what they're doing. But no, I NEVER accept incompetence for jobs I am paying for but likewise I wouldn't call them useless or have any negative feelings towards them if they don't do a good job, I simply don't pay them or I ensure they get the job done to my satisfaction before I do pay. I keep it simple :) and I rarely go to doctors, only for things like sick notes or sleeping tablets and I keep myself fit and healthy so I don't need them but if I did need them, I would make sure I go to somebody who I trust will do their best.
When I think bad thoughts about other people it makes me feel bad so I don't indulge in it. Instead, I will look within to where I'm being incompetent or whatever it is I think they're not doing and every time, without doubt, I find that the incompetence or whatever it is, is in me. If you spot it, you've got it, every time :) unless it doesn't bother you of course but if a person is taking their time to say negative things about somebody else, you can be sure they're bothered by that person's actions, otherwise why would they even give them a second thought?
But no, I NEVER accept incompetence for jobs I am paying for but likewise I wouldn't call them useless or have any negative feelings towards them if they don't do a good job, I simply don't pay them or I ensure they get the job done to my satisfaction before I do pay. I
These people are being paid very well regardless of their incompetence. I have no option available to withold their pay.
I keep it simple. If they don't deliver the goods then it's clear to me they can't help me so I will thank them, with genuine kindness, for their efforts, and move on. I don't carry bad feelings around just because somebody can't help me. I'm very complex, I have autism, ADHD and PDA so that aint gonna get sorted out over night and not everybody will be able to help me, and I don't expect them too and I don't hold bad feelings towards them if they can't. My best therapist years ago, who I had for over a year, admitted she couldn't help me anymore and I couldn't be more grateful to her for her being honest with me and doing all she could to help. Autism wasn't even on the radar back then so I can see now, how she wouldn't be able to help me, without the awareness that I was autistic and had these other things as well. And what do you call very well paid? I wouldn't call even £10,000. a month even near to well paid and I certainly wouldn't get out of bed for less than that and nurses and support workers don't get paid that so to me, they're doing amazingly well on the pittance they get paid.