Its been a busy few weeks with lots of thought-provoking discussions and viewpoints as well as transition work continuing in the background. My role as an expert by experience is advancing, which is making me feel more connected to a community, to a society I thought I would never part of. This is helping me massively both with confidence and building a life outside of a hospital setting. It is helping me to be more independent around public transport and opening me up to all sorts of possibilities
Even though I have been super busy I have still managed to find time for myself which has been super important in helping me to manage, regulate and process my thoughts and emotions. This is something I would have previously ignored to the point I would burn out, now I realize I need to take time to myself even if it is recharging my batteries. Self-care has become a massive part of my daily routine recently and it is helping me bare the weight of a hectic schedule. I used to think I don’t have time, I’m too busy I will do it later I would procrastinate. What I did not realize doing this was just building added pressure in my stress bucket. Now I take a few minutes every day to myself I use my sensory box or have a nice hot bath I give myself the time I look after myself I care for myself and in doing so it helps to create a balance within routine.
Recently I have got back into my cross-stitching project. I started it a year ago when I moved to the inpatient unit I am currently in. A unit where I have not been restricted on the use of my craft tools, this has been a massive game-changer for me being able to sit and cross-stitch, is so relaxing it helps me to process difficult days and it is fun.Over the summer though I fell out of my usual evening cross stitch routine, I just did not have the motivation or inspiration to do so. Instead with the lighter nights, I was walking on the grounds a lot more and got addicted to stranger things on Netflix. With autumn here and the dark cold, cozy nights approaching cross stitch has become a pattern to my evening routine. My motivation to cross stitch has returned I am finding myself spending a lot more time cross-stitching
My Transition to the community is going well I have started work with my new service provider and I am viewing a possible flat on Friday. It is all so exciting things are now moving pretty swiftly which is great
Now for the more pressing subjects around autism and learning disability care, it’s a massive part of the news at the minute and there is a mass of social media coverage. despite all the opinions that are whirling around I still hold my own. The first thing that brought about my first opinion is the announcement by the government that autism training will become mandatory for all health and social services/Professionals, this a change that I feel should have been implemented long before 2019 more and more people are being diagnosed as autistic but this is because it is becoming wider knowledge and there are better assessment’s out there for diagnosis. I feel it is becoming more well known due to the social media input, press coverage and the transforming care agenda and the fact it is becoming less of a label .so how do I feel about this news? I think it is a really good idea and as I said before something which should have been put in place long before 2019 but I also feel, this training needs to be quality assured and should involve experts by lived experience either helping to deliver the training or being rolled out firstly to these experts to make sure, the training is appropriate and includes the right information. After all experts by lived experience know best we live with autism day in day out
The other big press release is that of matt Hancock promising changes to fix a broken system for learning disabilities and autism. This is great finally some positive progress on such a difficult issue something which a lot of us have been hoping for years the Gov.uk website quotes
“as part of the review the government will commit to providing each patient with a date for discharge or where this is not appropriate a clear explanation of why and a plan to move them closer towards being ready for discharge into the community “https://www.gov.uk/government/news/all-inpatients-with-learning-disability-or-autism-to-be-given-case-reviews
In my opinion, some serious consideration needs to be taken about how they will do this, if services users are in seclusion or segregation I know from experience that sometimes the most excitement that I had was watching a fly, fly around the room.The transition of these people needs to be done in a carefully thought out way. How would you cope with entering a community setting when this is all you have been used to for months? yet alone somebody with a learning disability or autism with anxiety and other associated conditions. I vividly remember moving to a different unit and not being able to use stairs as I had not had that chance for over a year. A transition takes a lot of time so many things have to be put in place so many adaptations have to be made setting a discharge date is ultimately a how long is a piece of string situation. and puts a high amount of expectations in place for the service user
Another discussion point I recently had was around transitioning and that of future care I feel there needs to be some kind of legal framework around discharge, not just section 117 aftercare a bit like the CPA/CTR standards or a checklist I feel this will play a massive role in making sure patients do not relapse and they defiantly have all their support needs met. A further point which underpins this is the need to involve setting up and securing funding for the community and transition before admission to hospital this needs to be included within the admitting criteria for that hospital. This means all staff will always, be working towards discharge and the service user would be less likely to get stuck in the system. The transition would ultimately be quicker because the funding is already there and it is not the case of having to wait for ages for money confirmation for discharge and the patient knows he/she has a definite way out and feels empowered towards recovery. I know that this strategy has worked so well with myself recently and feel it could improve the speed of getting people out of services
Somebody told me a quote the other day and I feel it really fits my current situation as I am emerging out of services and beginning to use my experience to help other people
“It is better the light a candle than to curse the darkness”
Right now by using my experiences in a positive light to help other people I feel I am lighting a candle I am no longer cursing the darkness of my past.