***TRIGGER WARNING*** This post talks in detail about the current wait times for NHS care, as well as mental health treatments and physical health pathways. The post will touch on suicidal thoughts and the effect of delays in crisis care. Please only read on if you feel strong enough. You can find more information on mental health and suicide prevention support lines on this website, as well as charities that help with specific health concerns on my Get Support page. Please look after your own health first, and only come back if it feels right. ***TRIGGER WARNING***
About a year ago I posted on here asking a question about UK healthcare interventions outside of the NHS, and whether or not the charities and other organisations we are now relying upon can truly help us to recover. The post was called ‘Health support services – helpful tool or additional trigger?’. It might be helpful to read it before this, but it’s not necessary at all. The point should (hopefully) still make sense.
About 15 months have passed since that post and a lot has changed. Not just in my world, but in the world as a whole. New governments have been sworn in, new rules have been tossed about for us to gain insomnia from, and new organisations exist with the sole purpose of plugging more gaps for the NHS. In that time my opinions have evolved too, and so has the positive and negative impact that support services have had on my life. It felt right to post an update with those thoughts at this point. The reason why should become clearer at the end of this post.
My original thoughts focussed on my understanding of the impact that’s possible with these services, and how positive it might be if, IF, we could overcome the various ways that they weren’t working. I mentioned multiple barriers including wait times, difficulty accessing services, and the time-limited nature of interventions. It’s the latter that this post will focus on.
It’s counter productive to imagine a world where recovery interventions for those suffering with a mental illness or struggling with disabling symptoms can’t be undertaken because they only offer a time limited service, but this is a problem i’ve been presented with a few times now. Every time it came up I found myself asking the same sort of questions that many others do…
- Should I begin support services that have a short term expiry when most of my problems began with a breakdown over abandonment?
- Should I undertake an intervention knowing that the time available isn’t enough to get me to a better place with my symptoms (whether physical or mental)?
- Is it productive to develop a trusting relationship with a professional when they’ll be gone in 3/6/12 months and won’t be replaced?
These questions are all valid, and deserve consideration. The fact is, these interventions exist for a reason, but they are trying to fast track many clients by giving them an expiry at the moment the intervention begins. Is it really a positive start? Doesn’t it just feed in to the clients concerns about yet another abandonment and the effect it might have?
What do I mean by abandonment?
In my case the term ‘abandonement’ is very literal. I’ve now lost all members of my bloodline, so no family exists outside of my daughter and partner (and we aren’t married). As someone with no active social circle, no friends, no Facebook to lean on, I am pretty sad to say that I rely on those two people alone for any interactions. Any adult conversations (by that I don’t mean naughty, more conversations that you’d limit to grown-up ears) can only go through my partner. There is literally no one else. So when I talk about abandonement and difficulty building trust, it comes from a genuinely deep place that’s riddled with hurt and exhausted with the repeated let-downs and pain.
It gets so bad that I’m constantly scared those couple of people I have left are also going to go somewhere. I wonder in the night if my partner will suddenly leave one day and take our daughter with him. To be clear, we’re happy and still in love, we don’t argue outside of the usual pointless bickering, and we’ve never talked about a break in 12 years, but I’m so paranoid I still convince myself it’s a likelihood. People change their mind, right? Statistically it’s possible, but I worry about it in ways that go far beyond the usual ‘paranoid girlfriend’ stuff. It’s unhealthy and sometimes enters a dangerous pattern, I panic I have nothing left, that I must be worthless. If there’s no one here for me now, what’s the point? If it did happen, what then? I become no one and nothing. I cease to exist because no one knows I’m even alive.
Abandonment in any form can make you paranoid in ways that are difficult to imagine otherwise.
While these may seem like more extreme, throwaway comments, they are reality for many of us. Isolation following trauma is a truly overwhelming experience, and the abandonement feeling can come from many situations including grief, abuse, drug misuse, employment challenges, financial burden, friendship issues and family feuds, to name a few.
So when you’re this nervous but desperate for change, and being asked to trust strangers in a service that’s completely unknown to you, trust in it deeply enough to be open about where you are now and what got you here, then rely on those same strangers to get you to a new place that you haven’t been able to achieve yourself in years, all in the space of 12 weeks…is it unrealistic to be concerned about the same abandonement happening again? To me it’s not, and I suspect anyone else with the same challenges would have similar thoughts. I.e. for once, this isn’t a steph-centric problem. I will still elaborate.
Abandonement or trust?
Recovery support in any capacity takes trust. If you are fortunate enough to never have needed any, then allow me to explain a little. When you’ve been mentally stretched enough for it to have an impact on your daily life (think not attending events, personality changes, social isolation, habit changes, diet changes, job losses etc…) then you need to be able to talk openly about the struggle in order to overcome it. For some those conversations are a mountain, for others they turn out to be a molehill, either way getting ready and building that trust to talk is the most arduous part of the journey, and it takes time.
As the person trying to achieve recovery, you’re always grateful when a source of knowledge and support is matched with your needs. In my personal experience, it’s rare that a service has been matched with me inappropriately. You spend time reading through pages of introduction brochures and leaflets just to find out if this could be the service that holds the missing key…the one ring to rule them all. Expectation will naturally build and sometimes even some daydreams form. Thoughts of the possibilities start to grow organically and in a short time you become a bit…hopeful.
Fast forward a little. Your first appointment is booked after weeks, months, maybe years of living with something that’s preventing you from existing within the perceived norm. Something that’s leaving you feeling an outsider, unequal or, worst case, completely left out. The appointment starts and you sit opposite a stranger from a new service who seems to know a bit about you – your anxiety goes down and confidence lifts a little. Maybe this can help? Maybe there’s a future without all this pain, isolation and misery? Maybe change CAN happen and you’ll stop thinking you’re a burden rather than a value.
Imagine getting this far into your ‘high hopes’ only to hear something like…
“I just need to confirm how the service works. So, we’ll be able to support you with your recovery by doing *insert proactive work here* on a weekly basis, and the support will end after 12 weeks. This means your end date will be blah blah blah…”
The conversation dulls to a hum of white noise and all your brain repeats is “12 weeks”. Is it possible to achieve anything in 12 weeks? How do I start trusting this person in that time? What if I don’t manage what they expect? How long will I have to wait to start this whole process again? What happens after 12 weeks?
Your positivity is replaced with sentences that only ask questions about an end date. All possibilities are forgotten and replaced with ‘how?’. The build up where you thought you might get somewhere seems pointless because it’s clear you’ll be on your own again in just a few months.
For me at least, it’s not even been the people that were the issue. I’ve met with caregivers and support workers of all types that were really great people, only a couple of pricks, and in the scheme of things I think my ratio is pretty good. All those that I had positive interactions with understood the problem that these immediate time constraints had, and were almost apologetic that they existed. They really seemed to care and could see my case needed longer if anything worthwhile was possible. Whether they meant it or not didn’t matter, because it felt real. They seemed to have a vested interest in my world and a genuine hope that they could move me forward in their capacity. The problem was they knew the service had enforced timescales on them that meant they couldn’t.
N.B. – No, I won’t be revealing more about the pricks yet, but they are part of the problem.
If you want a clients recovery to be a long-term, meaningful and positive experience, then the client has to feel safe, heard, understood and positive about the journey too. Making a client anxious about even building a relationship with a caregiver because they’re being forced to discharge in weeks is utterly pointless.
Even though the people I had interactions with did all the things they could to make me feel comfortable, one critical ingredient was missing. Time. And it was completely out of their control and all I could think about.
My final thoughts
One last personal note to this post, and probably the most shocking of all (so prepare yourself). I wrote the majority of this while I was sat in our garden. This is something I’ve done 3 times now, after 4 years incarcerated within my home and having lost all hope available. Although I’m moving forward, 4 years seems excessive to get me to fresh air, doesn’t it? What did it take? How did I manage to get out? Through support that doesn’t have discussions of dates at all, just regular interventions with positive interations, discussions about my ups and downs (which still happen) and coping strategies for the scary things that lie ahead. It’s not an expiring product, it’s just support, but it took me years to get to it.
So my final thought is this – how much quicker would I have made it here (or maybe even further outside) if someone had been able to support me in the same meaningful, practical way all those years ago for more than 12 weeks? What if they’d said 6 months? A year? What if no end date had been placed on the help at all and it wasn’t something I had to worry about from the beginning? Could my recovery have been achieved by now if that stupid 12 weeks was never mentioned?
Although I’ll never know for sure, and although I don’t think you ever really recover, I do believe that if the narrative had no talk of expirations at all then so much could have been achieved and so much faster too. Time was wasted on paranoia and disbelief when it could have been spent far better on building that all-important trust from the get go.
The pressure people within the mental illness and disability communities face right now is enormous. The media, the government and society as a whole is beating on a drum about the level of our collective ‘burden’ and it’s something we spend a huge amount of our time worrying about. Many of us want to be a functioning part of society again, many of us want to be rid of this negative, neon, giant post-it note that’s been stuck to our backs without any understanding, empathy or even conversation. Many of us don’t want to be unwell at all. It’s bloody awful to live like this. But to make that happen support is needed. Not because we’re being obstinate, or trying to waste time. We don’t want or need it forever. We need it without trust-destroying caveats and pointless terms that add more barriers to engagement.
They exist. Remove them.
As things progress in my own recovery I may return to this topic again, but for now, thanks for reading.
Support
If you or someone you care about is struggling with their mental health in any way please visit my dedicated mental health and suicide prevention support lines page which has a list of places you can contact for help in a variety of ways and it is regularly updated.
Creative Steph 