Balance and Expertise

I have been putting off updating the blog recently because I have lacked motivation and creativity. Every time I think about it, it’s as if a barrier goes up and my mind goes blank. However, I am determined to overcome that today and actually get something written.

I was meant to be having a respite stay at a local ‘wellbeing house’ this week in order to try and get more of a grip back on stuff after my recent crisis. It has taken quite a while to organise from the initial referral so I was looking forward to finally getting the break. However, at the last minute they called to say that a couple of people had dropped out and so the stay wasn’t viable anymore. I understand the reasons why and know that it’s no one’s fault but I’m not very good at dealing with last minute changes to plans so it threw me off course for a while. 

Still, I tried to focus on the positives like not having to surrender ownership of my dog for the fortnight and knowing that I had cleared my diary so I could effectively have a week of respite at home anyway. I have had some success in delivering that for myself but I could really have done with the extra support from staff that the stay would have brought too. Hopefully they will be in touch to reschedule at the beginning of next week.

I have been quite strict with myself towards saying no to commitments that I feel I can’t handle at the moment as promised in my last post. I have turned down quite a few requests for me to take part in activities as an Expert by Experience in the coming weeks. I’m not giving them up altogether and will return to more when the time is right but at the moment I am prioritising my recovery.

That said, I have still continued to be involved in the progression of the local personality disorder strategy and potential service development as well as recently attending a Mental Health First Aid (MHFA) course, a conference on the therapeutic community approach to PD treatment and been a panellist at a recent local mental health event. 

The MHFA course was quite eye-opening for me. Having had mental health issues to some degree or another for my entire adult life, I find it astounding to think that some people never once have to think about their own mental health, or even that of someone else. But apparently, quite a lot of the population are that lucky! It made me realise the huge need for MHFA courses but also that the current reach of them is nowhere near adequate to educate the entire nation. 

One view of an attendee which came up on the day was “people who say they are going to kill themselves are just attention seeking - people who really want to do it won’t say anything to anyone”. Now, I’ve heard this before but roughly 15 years ago. It really shocked me to discover that it is still a widely held belief and actually made me furious. How many times when someone dies by suicide do the people around them say “why didn’t they reach out?”? Why??? Because of stigma exactly like that, that’s why!!! Perhaps I am over sensitive to the notion of being attention seeking as I feel with the label of EUPD, everyone judges me to be so, but how can society be so hypocritical to spread the message ‘speak out; ask for help’ and then simultaneously judge the people who are brave enough to do so as attention seeking and thus not worthy of said help? Needless to say, I corrected this attendee’s view but can only hope she passes it on further.

It’s been a year since I started my role as an Expert by Experience now and I have been thinking a lot lately about the position, its value and the degree to which it is respected amongst multiagency professionals. 

At the recent event where I was a panellist, we received questions from the audience about the role and one of these asked about the contentious issue of whether Experts by Experience should be paid for their contributions to the various causes they work towards. An Expert colleague of mine voiced how she didn’t expect to get paid for her involvement in anything because she saw it as a way of giving back to the NHS, which had had to spend so much money on her when she was ill. I agreed with this on one level - the initial reason I entered the role was because I wanted to give something back myself but ultimately I said that if services are serious about co-production and involving service users/carers as ‘Experts’ then they should be recompensed as such. 

Co-production seems to be the latest must-do craze in services (and I’m not saying that’s a bad thing at all) but it can only work if the views of those with life experience are valued as highly as those with academic/business qualifications. And if they are valued just as highly then why should we expect people to be sharing them for free? When you add in the time that is spent reading papers, preparing presentations and analysing evidence, in addition to attending the meetings or events that people see, it doesn’t seem far from slave labour to expect anyone to do it all for nothing. No one would expect the chair of the CCG or the clinicians who also attend the meetings I do, to waive their pay for the hours they put in so why should I be doing it for free? Either I have value or I don’t - people can’t expect to have it both ways.

I genuinely feel now that the organisations I am involved with do all value my input as an Expert by Experience, particularly as my confidence (and assertiveness) in taking part in meetings etc has grown over the year. Only yesterday I was asked to sit on a working group as an equal member amongst psychiatrists, nurses etc and I am quite proud of that. However, for some of the things I do, I haven’t even received reimbursement of travel expenses. 

I’m not writing this as a moan or demand for money(!) but rather as an observation of how the lean towards shared ownership and accountability of processes may seem ostensibly met and balanced yet underneath there remains a void that people seem happy to let Experts by Experience fall into.

Ok, time to get off my soap box! For someone who’s had nothing to say for the past month, I seem to have found my feet again now at least!