In 2019, Surrey Choices committed to being a Mindful Employer. Surrey Choices are creating a supportive and open culture for employees where everyone is able to talk about mental health confidently, and aspire to appropriately support the mental wellbeing of all staff. We sat down with Laura, an Activity Facilitator told us about her experience of Mental Health.
What made you apply for your job with Surrey Choices?
I had spent over ten years working for large international corporations, in business development and marketing. It was very well paid, but highly demanding and I found the competitive corporate office environment very damaging to my mental health, and did not receive much support from largely anonymous and remote HR departments and senior managers. Eventually, I was forced to quit on health grounds, which gave me the chance to have a real think about what I wanted to do with my life. I really didn’t know what I was suited to, but I knew I wanted to help other people, and to try and make a difference to people’s lives. I saw the advert for Surrey Choices and went for it.
Did you declare your mental health issue whilst applying?
I did! For the first time ever! I had decided that trying to hide my mental disorder had resulted in disaster in previous jobs and so from now on I would be open and upfront about it. I remember the job advert for Surrey Choices welcoming applications from people with disabilities, and I thought well if this company, who’s whole business is supporting people with disabilities, if they aren’t open minded about employing people with disabilities then no one will be!
I was very scared about doing it, about whether I would be able to explain it sufficiently well, there was the very real likelihood I would just be instantly talking myself out of a job!
What adjustments were made in your interview?
I didn’t request any adjustments be made, but I was very relieved by the response I got from my interviewers (Jill Budd, Sharna Laws, and Alison Good). They were interested, asked questions, and were encouraging.
What is your mental health problem?
I have regular bouts of depression, and I also live with Borderline Personality Disorder. I have been an inpatient in psychiatric hospitals twice (which gives me a whole different level of insight in the deprivation of liberty act!). Sometimes now called EUPD or EID, Borderline Personality Disorder is best described as a mis-wiring that occurs during the brain’s major developmental period (birth to early 20’s). The exact causes are still unknown but are generally accepted to be due to significant trauma suffered during this time period, poor attachments with primary caregivers, neglect and other forms of abuse. It is more common in females than males. There are 9 different traits of the disorder and 256 different possible combinations – so no two people will be the same. The disorder also fluctuates with age, with symptoms tending to be more severe in the twenties. People with the disorder find it very difficult to regulate their emotions, and to maintain stable relationships/friendships. What appear to be unreasonable or extreme emotional reactions to others are generally rooted in an overwhelming fear of rejection and of not feeling good enough, or worthless. Sufferers are commonly plagued by a powerful internal negative voice, making it difficult to impossible to accept or believe that there is anything good about them at all. Self-harming otherwise impulsive and potentially self-endangering behaviour are common. Suicide rate among people with this disorder is ten times higher than found in the general population.
BPD does not respond to medication, though the depressive aspect can be managed by antidepressants. Treatment pathways have only been in place for BPD since 2005 and before then people with this diagnosis were considered to be untreatable and suffered massive amounts of stigma within the medical profession as a result, some of which still lingers today. The therapy required to move into the ‘recovery phase’ of the disorder is long term and intensive, and sadly not everyone with the disorder will be suitable to attempt it. The person needs to have an understanding and acceptance of the diagnosis and disorder, be willing to take responsibility for their own behaviour and to have a certain level of self awareness to continue to manage the disorder for the rest of their life.
The disorder cannot be ‘cured’ but the brain can be re-taught and ‘re-wired’ with more appropriate responses to external stimuli. Initially, it’s a very exhaustive deliberate manual process, but over many years the idea is that it becomes more automatic and the person can live, externally at least, symptom free.
What do you think your colleagues should know about you?
I am always happy to talk about my disorder and mental health in general to anyone who genuinely wants to know more and increase their understanding.
How can your experiences help the people we support?
Many of our customers suffer from mental illnesses, which are often poorly supported because their learning disability can make it difficult to get the dosage of medication correct, and talking therapies may not be available to them, or not as effective.
And I get it. I know how it feels when you have your medication changed, and the side effects that has, or when the dosage isn’t right. I know how it feels to be in the depths of depression, or be disoriented and confused, hallucinating, and how terrifying that can be, to truly believe that everyone hates you, or is out to get you, that you are unloveable, and to feel suicidal. I can explain it to colleagues who may not have any direct experience of mental ill-health and feel like they are trying to work in the dark trying to support someone who they are struggling to understand.
We also have many customers who are diagnosed with Borderline Personality Disorder, or display traits of the disorder. The treatment of BPD is still in its infancy; the NHS only started even trying to treat people back in 2005. It is a very difficult disorder to self-manage. You need to have a certain level of self-awareness, the ability to identify what you are feeling and the willingness to challenge negative thoughts. That is a challenge for anyone, and not everyone with BPD is able to attempt treatment and progress into recovery, never mind if they also have a learning disability as well. Because there is so much stigma attached to the diagnosis, and it is still so misunderstood, it’s common for a formal diagnosis to not be given, or for it not to be disclosed to the patient, if it is felt that the person will not be able to access treatment.
But living with un-managed BPD is horrendous and terrifying and destructive. BPD is second only to schizophrenia as the most deadly mental illness (cause of death being suicide). I feel that there is work that could be done with people with learning disabilities, to help those with BPD, but research into BPD, when it is happening at all, is still focussed on the neurotypical population, never mind the added complication of trying to make the treatment accessible for people with additional barriers to treatment.
But I really think that many of the self- management strategies taught by the NHS could be adapted for people with a learning disability. They could be supported to identify what they are actually feeling in a moment of emotional stress, what is physically feels like for them, the staff supporting them can also learn what to look for. For some more able customers, work could be done to help them and the staff supporting them think about what is causing their fear, and staff can then support them to challenge those negative thoughts and fears. Just giving staff supporting customers with BPD and other mental health conditions the information about those illnesses, to enable them to have a little more understanding about what is really going on for that person. It actually would tie in nicely with all the PBS work we do, since customers living with mental illness, especially BPD, may often also display challenging behaviours.
How does this effect you at work?
I operate in a permanent state of self-analysis. I have to be constantly consciously aware of how I am feeling, checking that against what is happening around me and making sure what I am feeling is appropriate to the environment and situation. If I’m out of sync, having an extreme reaction, then I have to catch that and challenge what I am feeling. Later, I can mentalise it more deeply and figure out why I had an extreme emotional reaction, what was triggered for me, so I can spot it earlier next time. I am also routinely having to challenge negative thoughts.
And I’m doing all of this internally, whilst having a conversation with someone about something totally different! Interestingly, I don’t get triggered at all by our customers – I think this is because they don’t tend to conceal what they are thinking are feeling, or if they do try to, it’s still fairly evident. They are an open book to me.
Most other people will ordinarily not reveal what they are thinking or feeling at any given moment – they are like a closed book, where I can only sometimes see some of the pages, and then only what the person wants me to see. Which means my BPD brain then tries to ‘helpfully’ fill in all the blanks, and they will, without exception, be something negative about me!
So all of this is pretty exhausting, and I don’t always get it right all of the time, especially if I’m already tired or stressed. If I appear withdrawn I’m most likely trying to process an emotionally busy day.
How can your colleagues help you at work?
For my colleagues reading this, please don’t treat me any differently than you did before you read this. Don’t be afraid to ask me anything, I am happy to try and answer any questions you may have.
What adjustments does Surrey Choices and your managers make for you?
One of the main things for me was that I was able to go to a four day week, which means I have time in the week to attend to my mental health. I have also been able to change that day to a day that allowed me to access therapy when I was offered the opportunity by the NHS. By being open with my manager, I have been able to coordinate planned changes in my medication so that it has minimal impact on Surrey Choices, and been able to be honest with my manager if I’ve been suffering from adverse withdrawal symptoms. When they have been aware that I’m having a rough patch mentally, they have made the effort to catch up with me face to face at the end of every day to see how I’m doing.
What development opportunities have you been given at Surrey Choices?
I trained as a Rebound Therapist and now lead the Rebound Therapy at Lockwood, which is hugely rewarding and also a lot of responsibility, and I feel really valued by my manager that they put me forward for this. I am also an Autism Champion, which I found really interesting and valuable and has really informed the way I support some of the customers I come into contact with. I have always been offered the same training opportunities as my colleagues, and have never ever felt disadvantaged at work for having been open about my mental health. Working for Surrey Choices has been such a positive experience when held up alongside my previous experiences in the workplace.
What does your manager do to help you each day?
They always have an open door for me. They listen without judgement when I just need to have a rant and get something out of my system. They give me time to talk things through and mentalise my reactions if something has happened to cause me emotional stress and I’m not able to do it on my own for whatever reason.
Why would you recommend to your colleagues that they should let their manager know about their mental health problem?
If we are sick, or injured and need lighter duties for a while, or we have epilepsy or are diabetic, we don’t hesitate to tell our manager, so that they can make adjustments and support us appropriately. Mental ill-health should not be any different. Your manager wants you to be able to do your job to your full ability – but they can’t support you to do that if they don’t know!
What changes would you like to see be made to help people with mental health problems?
I would like to see mental health be given the same priority and funding as physical health (though our NHS is chronically underfunded across the board). Waiting times to access mental health support are horrifyingly long, a year and longer in some areas before you even get to speak to someone. Can you imagine waiting a year to see your GP for a physical problem? We are in a firefighting situation currently, with care having to be prioritised only for those in immediate crisis needing hospitalisation. But once stabilized, those people are once again without support in the community and so inevitably return to crisis point again, and then they will be supported and stabilized and de-prioritised again and so the cycle continues. It is a desperate and unsustainable situation for all concerned, and I know that those who work in mental health share in that frustration.