This is the text of a speech given by Sue Sibbald to the NHS Confederation annual conference in Liverpool on Friday 6th June, 2014. Many thanks to Sue for sharing this. To read more about Sue, see the end of the post.
Imagine being diagnosed with something and all you are given is a copy of NICE guidelines and told to go away and come back in four months to see what therapy you wanted. I got a diagnosis of BPD (Borderline Personality Disorder), whose symptoms range from self-harm and suicide attempts to dissociation and difficulties around abandonment and rejection. After I had told my psychiatrist I wanted a cure and I would be dead by the time he did anything I went onto the Internet to discover what this diagnosis meant… I went looking for a cure as I was overdosing and self-harming, but in my search I discovered ways to manage, and that there was no magic fairy with a wand to sprinkle magic cure dust over me .
So I began trawling the Internet. I discovered Facebook groups with people with my diagnosis, and I discovered it is a diagnosis which is highly stigmatised – particularly by healthcare staff. I hated thinking people felt badly about me – so I was on a mission to educate.
I discovered a Facebook group where peers taught each other dialectical behavioural therapy (DBT) skills – a therapy created for people with BPD. They helped each other even when people were in crisis, as there were no services. Peer support at its best.
I owe those people a lot. They taught me compassion and ways to self-manage my illness by using DBT skills.
I also started writing letters to my NHS Trust. Not letters wrapped in a brick, but with ideas, and I eventually spoke to the Medical Director, Professor Tim Kendal, telling him about my ideas, and I was asked to join the Personality Disorder Strategy team for my Trust. That is key – being involved at the top. I have my friend here – my little nodding dog. It’s a reminder to people. Don’t drag patients or people who use services in at the end just to agree to your ideas. I call this nodding dog syndrome. It’s not true involvement or participation: you aren’t tapping the true potential of patients, or the creativity and ideas they may bring to the table. This doesn’t help them self-manage – it leaves them still being the ‘patient’ – or ‘patiented’ (a term I love).
On with my story – I then began teaching myself skills, learning everything I could about my diagnosis, and I became an expert. I went to America to attend a couple of courses and spoke out there. I made friends via social media and started a chat on Twitter called #BPDchat, which still runs every Sunday, in which my peers come to support one another and share ways to manage. I also got the NHS to employ me…. Not sure if that is a good or bad thing … And with psychologist colleagues, I co-wrote a psycho-ed course for my Trust giving people an understanding of their diagnosis and ways to self-manage, and the feedback is amazing.
I also wrote a 27 week DBT skills course for my Trust which has been piloted with good results. I trained staff to help reduce stigma around the diagnosis, and taught them DBT skills so they could help people in services too. I also helped the families and carers so they could better manage and support the people with the diagnosis. I think that covered all the bases… Everyone learning to manage together…
Through all of this I was myself recovering. I self-managed my way to a better me. This is the message I give to people. I love Rachel Perkins, a recovery expert and doctor: she talks about it being dispiriting to be on the receiving end of services all of the time – I think being in control is a far better place to be.
I’ve been asked to talk about barriers that get in the way of people self-managing – an example of a barrier which gets in the way is people not wanting to give up their power. Feeling precious about ideas or their status: ‘I mean how could a mental person have ideas?’
Gobbledygook, big words, hocus pocus, and jargon needs to be removed, so that everyone can participate. Someone I know on Twitter, Alison Cameron, tweeted this once about the use of jargon – she said: ‘My current faves are ‘triangulation, iteration, and granulation’ – sends me to the regurgitation station’ Apologies if anyone is using those words in their speeches today…
Then there’s people not wanting to participate. How can you help motivate people to try to help themselves?
Then there’s people in suits who don’t look like me… You’re scary … make me feel inferior… I feel like you’re in control, but that’s silly because I have so much to give, but it makes me feel that way…
Also making it difficult so that people can’t give feedback; making sure there is digital inclusion, for example – Can everyone get online? I have seen people hold roadshows for people to get online, and Leeds Trust is a good example of this.
Then, not giving all the information so people can’t make considered decisions – this is why I think education is so key.
Fear of new technology that enables people to live their lives more easily – apps, telecare etc. I think the NHS has been slow on the uptake although I do see more movement towards using them now.
In summary I think we need to see patients and people who use services as resources who have knowledge, experience, and the ability to self-manage, and aren’t just nodding dogs…
Sue Sibbald campaigns for better services for people with borderline personality disorder.
Sue blogs at: http://bpdffs.wordpress.com/
and she is on Twitter at: @bpdffs