'Peer support saving lives' Simon Kitchen, Bipolar UK
Updated: Sep 22, 2021
'I don't want to say that I've got a lock-down nostalgia, but it was a kind of the best of times and the worst of times.’
Simon Kitchen joined Purposely Podcast to share his story. Simon is the CEO of Bipolar UK and is driven to help transforming the lives of the most vulnerable in society through voluntary action. He has a track record of influencing public policy, building alliances to achieve social change, and using co-production to drive service improvements.
What is Bipolar?
‘Bipolar is a severe mental illness, predominantly caused by underlying genetics but there are also environmental influences. People will experience extreme highs and extreme lows and it's often hard for people to understand the condition. We use a thing called a mood scale to be able to explain it. On your best day Mark, say for example you might have just arrived in New Zealand and you're really excited to be to be in the country… the mood scale would have you as a six say… and then on your lowest day, perhaps it's been raining for three weeks solid, and you haven’t been able to go out you might be down to a four on the scale. People with Bipolar will have a much bigger range of experiences, they'll go down to zero, which is deep depression, often with recurring suicidal thoughts and then all the way up to a 10 which can include psychosis and hallucinations.’
‘So, there are people who are more familiar with those kind of extremes of the condition and then there are different stages in between such as mild to severe depression as well as hypomania – this is quite an interesting state of mind where people can be incredibly productive and on a permanent adrenaline rush. It's a difficult condition to live with because people can go between the moods at the same time, both the depression and the mania can be really destructive.’
There's a million people living in the UK with bipolar, what does the destructive side of it look like?
‘You're right, it's about 2% of the adult population living with bipolar. The most obvious example and most tragic is suicide and having bipolar increases the risk of suicide by 20 times in the general population. We lose a lot of our community to suicide every year and we do a lot of our work to reduce that and stop people taking their own lives. Manic episodes can be incredibly destructive, people get themselves into huge amounts of debt and they'll go on spending frenzies, become hyper sexualized, getting into lots of relationships that they regret later. This means people can be estranged from their families and they might have lost their job as well, they can get into a cycle where they continually have to rebuild their lives.’
How does Bipolar UK respond?
‘We really try to get people to maintain a stable mood so they can rebuild their lives. We also help them to overcome the destructive impacts from the manic episode. We help people to access counselling so they can come to terms with the trauma that they've experienced and assist them to access better treatments. We also help them with practical things like debt management, it's so important that people with Bipolar are able to get back on their feet financially.’
‘We often try to plug the gaps that the National Health Service (NHS) should be providing but aren’t able to, essentially going back to the roots and initial values of the charity which focused on facilitating peer support to people with bipolar. Our organisation has a lot of people with lived experience who volunteer their time and help to support other people with the condition. These people understand the challenges people face and they just want to be able to play a role in improving their lives. We doubled down on our support groups (especially during the pandemic), and we launched a new community platform so people can meet each other online in a safe space. We’ve also started to pioneer other services, for example instead of providing an expensive and resource intensive helpline we delivered a peer call-back service where people can ring up and then get a call back.’
Have you had any personal experiences with mental illnesses?
‘One of my school friends has bipolar and he had his first episode in his mid-teens. He was off school for a while, and he was in and out of hospital. Me and a group of friends were supporting him through that. It was tough seeing him like that, with big switches from being super athletic with a six pack to becoming really overweight within a short period of time. The great news is that he got control of it eventually and he also met someone and got married, he seems to be having a really happy life now and much more stable.’
Sadly, my brother in-law had bipolar, and he took his own life which left a massive hole in our family. It's very sad especially because things might have been different if he had been able to access the type of support offered by Bipolar UK.’
Your first CEO role, what were things like when you took the reins?
‘Morale amongst the employees was really low and pretty much everyone was looking for another job. It was also all-hands on deck to try and get some funding to be able to keep the charity going in the short-term. I then focused on developing a new business model, previously the operational model focused on employing staff to provide one to one support which can be really effective but also expensive and it doesn’t help lots of people. I was able to steady the ship and I was lucky that some great staff decided to stay, they've been fantastic over the last four years.’
Has the pandemic been challenging for people with bipolar?
'We carried out a survey amongst 2000 people with bipolar and about half of them had relapsed. Twice as many people were actually hospitalised for suicide attempts than were hospitalised with COVID-19. It exacerbated the already existing mental health crisis. Normally a third of people access mental health services including specialist psychiatrist’s and crisis teams, the fact that this was difficult to do during the pandemic made life a lot harder for people with bipolar’.
How did you find being a leader during COVID-19?
‘It was quite scary at first and we were worried about funding, things settled down though and we focused drawing up different budgets for different eventualities. We also settled into a new routine and some things became a little bit easier, like not having to commute. I was really lucky that my wife helped out a huge amount she took on our social media having been furloughed from her own job. In some respects, there were the benefits, but we were working from home in a small two bed flat with a baby and that was really tough.
I have to confess that one of my coping mechanisms was playing video games online for 30 minutes in the morning and 45 minutes in the evening. So yes, a CEO who plays fortnite to relax and escape!!! I don't want to say that I've got a lock-down nostalgia, but it was a kind of the best of times and the worst of times.’