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jolene instan

If you’ve ever referred yourself, a family member or someone you support to Lifeways, and you’re based around Birmingham, you’ve probably been assisted by Jolene Instan, our Enquiry, Referral and Assessment Manager for the West Midlands.

In her role, Jolene has an extensive, personal understanding of what it’s like to live with support needs. That’s because she herself lives with attention deficit hyperactivity disorder (ADHD), and is currently being assessed to see if she lives with autism spectrum disorder (ASD).

In her account below – which she hasn’t shared in public before – Jolene talks about her decades-long battle with misdiagnoses, ineffective medications, lengthy wait times to access support, and the coping skills and deep sense of empathy she’s gained along the way.

This is her story.

‘My head never has down time’

Since the age of 16 up until last year when I turned 43, I battled with a misdiagnosis of mental health needs.

I was prescribed different cocktails of medication for 25 years. Along the way I also had to battle the system, attend numerous assessments, and wait to be referred for psychiatry. I was continually offered Cognitive Behavioural Therapy (CBT) support, as well as mental health and wellbeing through online learning. Yet this support didn’t help.

I was continually attending appointments, telling GPs and psychiatry teams how I was feeling.

The best way to describe what goes on in my head is this:

Think what the M6 spaghetti junction looks like. Now imagine this at rush hour - with no slow signs, and a million cars going at more than 70 miles per hour and not stopping.

My head never has down time. I was told I was anxious, and that my mental wellbeing was deteriorating, and being prescribed yet another pill, or an increase of the current medication I was on.

‘I work at an extremely fast pace’

Within my job I work at an extremely fast pace. I struggle to concentrate on a lengthy task so work quickly to complete everything. I strive for perfection and achieving targets and KPIs - which is great for me in my current role!

In my personal life I cannot rest. I’m on the go all the time. This means I do a lot of cleaning, continually creating lists, and needing to cross them off.

Would my house catch fire if I didn’t do these every day, for numerous times per day?

The answer is of course no - but my head won’t allow me to stop. People sometimes tell me to read a book or have a relaxing bath. Yet this isn’t possible.  My head will simply not relax to enable me to do this. For example, instead of enjoying a long bath, I just wash and get out as quickly as I can.

‘I just needed answers’

In a previous job, a former manager suggested I might have ADHD. At the time, I didn’t think this suggestion was appropriate, and didn’t appreciate the comment.

But in September 2017, I attended a Multidisciplinary team (MDT) session. The mental health professionals there agreed that I needed to be referred for an ADHD assessment and also a referral for an ASD assessment.

I was then guided by these professionals, and advised to come off all prescribed medication. After years of assessments I was formally diagnosed with ADHD in November 2021, along with borderline autism. The autism assessments continue so I await in anticipation the results from this.

ADHD is a neurodevelopmental condition which comes in three types. I have hyperactive/impulsive ADHD.

Since my diagnosis, my life has been improved in such a short time. I just needed answers and now I am working on managing myself. I focus more on my attention to details.

Nowadays, I try to pace myself at work, instead of trying to complete the tasks of two people in one day.

I now allocate myself focused working time, and take deep breaths when my head is racing to try and slow it down. I also make sure to take a break every day to go for a walk with my dog. This gives me head space. I also share how I am feeling with my manager when things become overwhelming.

‘I have empathy and understanding’

I am now an Enquiry, Referral and Assessment Manager at Lifeways. I work in the area around Birmingham, Coventry, Dudley, Warwickshire, and Worcestershire.

I’ve got lots of experience in health and social care, having worked in the sector since I was 17. I managed my first residential complex service when I was 21, and that service gained excellent CQC ratings.

My job now at Lifeways is fast-paced. I support families, parents, and individuals who may in the future move into our supported living or residential services.

Lifeways has an amazing digital communication system which enables me to keep track of everything I am doing.

I also manage my own diary which allows me to allocate lengthy type-ups of assessments of individuals into smaller pieces. I have a sense of empathy and understanding of what families and individuals would like.

My manager, Ros Creamer, a Community Engagement and Development Manager for the West Midlands, is most supportive. She gives me autonomy and trusts me to deliver.

‘I knew there was always something not quite right with me’

I think the reason I have done so well in my work life in health and social care is because I knew there was always something not quite right with me.

My job enables me to understand the needs of others. And I have personal knowledge and compassion about the experience which comes from living with ADHD.

I want to continue to build and be part of services that provide excellent person-centred care!

 

About Lifeways:

Lifeways is the UK’s largest team of support professionals providing support for adults in the community.

We support adults with diverse and complex needs, including learning disabilities, autism, physical disabilities, acquired brain injuries, and mental health conditions. 

Our 11,000 colleagues currently support almost 5,000 individuals who live in our 1,500 supported living and residential services across England, Scotland, and Wales. 

Find out more about how we change people's lives at: www.lifeways.co.uk  

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