Cautious, Guilt-Ridden Gratitude (and the O word that shall not be named)

Oh the complexities of very poorly brains. Guess what? I have news – good things – that should make me want to dance or at least crack a little smile, but instead I am riddled with guilt…wishing that I could sacrifice myself and give others – the dozens of others that I know personally, the thousands that I know are out there – who are let down by the mainly nonsensical system the good things instead. They deserve it. You deserve it if you’re reading this, and I’m sorry – genuinely – that I can’t pass it over to you, instead, by sacrificing myself; I’d do it and help you instead in a heartbeat.

It’s easy, important and perhaps comes more naturally to shout about the bad stuff in the hope that your voice could contribute to the crowd clamouring for change but I wanted to take the time to make some noise here about care that is finally being delivered in the way that it should be: truly individualised and person-centred, at the highest practical/possible levels within the constraints of the stretched and under-provisioned system. 

But anyway, what is it that I’m grateful for and (?)O* about? Well, finally, after so many problems and being let down so many times by bad/neglectful/damaging care (with isolated elements of good care thrown in – e.g. my original care coordinator, some great individual professionals), leading to countless suicide attempts (including 3 incidents requiring CPR, ITU, lots of time in resus and on general wards) than I could count, we are actually looking at an appropriate level of care both via the placement that all hopes have been pinned on and – as of yesterday – in the time between now and then.

So, this placement… It’s a specialist, 24/7 placement over 1-3 years, for 10 complex and high-risk patients who are either moving there from hospital or as an alternative to admission, in a home setting. It’s designed to be an entirely psychologically-informed environment, so has a clinical team of a Social Worker, Psychologist, Occupational Therapist and Senior Recovery Worker (who will be working with our wider clinical teams, e.g. CMHT, Psychology Service, Crisis Team), supported by Recovery Workers who will be aided to support us with their advice so that (hopefully!) the help is appropriate to each of our individual needs/illnesses/histories/presentations. I believe this one is aimed particularly at people with personality disorders but I’m not sure if they have or will widen the remit. This is a brand new charity-run format (with just one pilot scheme before it), the building still isn’t finished, the staff still haven’t all been employed and I’m the first patient to get through the assessment process…so it’s all brand new and unknown for all of us! But I am incredibly lucky to have this opportunity and I’ve worked so damn hard to get here, that if I take an objective standpoint I might even use the O* word about my future for the first time ever. I still haven’t let myself believe that this is actually happening, just in case, so my emotions definitely haven’t caught up. We are also looking at a very vague start date of maybe May dependent on a couple more people getting through the assessment process, so it all seems quite intangible and far off at the moment.

Which is where the next bit of gratitude comes in… Finally, after so much has gone wrong in my care and the immensely negative impact that’s had on my mental health, physical health and safety (and a LOT has gone wrong with such catastrophic and life-threatening effects, as everyone admits) we seem to have landed on an appropriate, safe and sensible plan to try to get me through the time until I can have the 24/7 support that I really need – and I am grateful beyond words to those professionals who have advocated for me at this time, pushing for the support I so desperately need to remain alive and actually make it to the placement. So…

• Inappropriate, triggering, traumatising, shaming care coordinator has been removed
• I finally have a CPN again – and it is someone who worked with me briefly when she worked as acting manager for the crisis team (and who worked well with me with a strong therapeutic relationship embracing our shared interests and my creativity in a therapeutically helpful manner) so, even though it’s been almost a year since we last saw each other, I have a glimmer of hope (eek – another one of those scary words!!) that we could build a strong therapeutic relationship again and she might be able to help fight alongside me down this tough road
• I will see my CPN once a fortnight and my support worker once a fortnight (opposite weeks)
• I have just been offered a staggering 60 sessions of weekly psychotherapy (much to my bafflement…I had to ask the psychologist if she said “one six or six zero” when she told me at the conclusion of our extensive assessment), hopefully starting next week
• The crisis team have put a bespoke plan in place until the placement that includes:
  • Scheduled calls every evening with staff members known to work well with me whenever possible
  • A huge piece of safety management work to be done with the team manager/a CPN once a week (I’ll try to write some more about this another time as it’s a promising piece of co-produced work for high risk patients who tend to have capacity)
  • A piece of therapeutic/recovery-focused work to help build me up for the placement by trying to reconnect to the world and myself a little once a week
  • Weekly assessment during the latter visit to see if face-to-face support needs to be put in place each weekend
• The clinical team from the placement will see me once a week to start working out my needs and goals, and to start building therapeutic relationships
  • I already feel amazingly and unusually confident that there’s the potential for some solid therapeutic relationships there

There really couldn’t have been a more extreme nothing-to-all transformation in my care and I am flummoxed by it! Flummoxed but more grateful than I can put into words for what is being offered now.

We’re totally in limbo right now whilst this all gets put in to place, but if I can hang on a few weeks… *fingers, toes and eyes crossed*

How bloody lucky am I? How bloody guilty do I feel?
So unworthy and so undeserving of this much help and support.

 

*Optimistic (shhhhhhhhhh)