For Disability History Month, Kate Smyth shares her story of overcoming adversity, championing diversity in the NHS and co-founding the Disabled NHS Directors Network (DNDN). Her experience is not just about facing the challenges of living with multiple sclerosis (MS), but about transforming obstacles into opportunities for advocacy and leadership.
From time to time, I am asked how becoming disabled has impacted my career progression and lived experience. There's no getting away from the fact that being disabled wasn't in my life plan but, as a Leicester City fan, one had to get used to disappointments.
My future was mapped out; a grammar school education and a degree in urban and regional planning set me on a successful local government career pathway. I had sporting success too, playing county badminton and for teams in the Lancashire league.
But then there was a problem; I started to feel numb, had difficulty walking and for a while had double vision. After numerous tests I was diagnosed with MS but advised that it was probably benign and not to worry. That was 34 years ago.
Ultimately, I decided to retire from local government. I had no expectations about what work I might be able to do, but then, I was asked to undertake some consultancy work and realised that there might, after all, be life after receiving an MS diagnosis.
I'm afraid the doctor that diagnosed me was mistaken and my MS has not been benign. My sporty lifestyle disappeared. Over the years, I have changed from feeling as if I was walking in treacle wearing lead boots, to using a stick, and then a wheelchair. Now, I cannot move from the neck down, use a bright red sparkly wheelchair manoeuvred by head controls, and am helped by my very handsome assistance dog called Zy. My home has been adapted significantly with a wet room and lift. In addition, I need carers in the morning and evening. I had to give up driving my adapted car more than 10 years ago.
My NHS experience has been very mixed. Almost 12 years ago, I joined a clinical commissioning group as a lay member. It wasn't a happy experience, and I was surprised at just how difficult doctors found it to work with a very disabled person. However, I was determined not to be pushed out and was over the moon when I succeeded in being appointed as a non-executive director (NED) at Lancashire Teaching Hospitals NHS Foundation Trust (LTH). I've been a NED there for over four years.
Initially, I had the feeling that I was just making up numbers and ticking a 'diversity' box, but I now know that isn't true. I chair the safety and quality, and charitable funds committees and the working atmosphere and my colleagues are brilliant. The trust has made reasonable adjustments, including not holding early breakfast meetings and finding me an accessible car parking space, which are like gold dust.
The need for the network was reinforced when the Workforce Disability Equality Standard (WDES) team published its statistics for 2022 which showed that only 4.6% of board members declared that they are disabled.Non-executive Director
That said, IT adjustments have been a challenge and are still work in progress. Using Microsoft Teams and voice activated software is not easy. I am also helped with a job aide, funded through Access to Work. I really enjoy working at LTH with very supportive colleagues. My skills, experience and my different lived experience are valued highly, and another board member has recently declared themselves to be disabled, explaining that I had inspired them to do so.
In 2020, I discovered that the NHS thought that there were less than 20 disabled NEDs. I thought this was a major issue that needed to be addressed bearing in mind that 20% of the working age population has a disability and boards are meant to reflect their local population.
In the autumn of that year, I co-founded the DNDN with Tom Hayhoe, then the chair of West London NHS Trust, and have been a co-chair since March 2021. The network now has in the region of 60 members from all regions in England, a good gender and ethnic mix and members who have a very wide range of impairments including sensory impairments, mobility difficulties, hidden impairments, mental health issues and long-term conditions.
The need for the network was reinforced when the Workforce Disability Equality Standard (WDES) team published its statistics for 2022 which showed that only 4.6% of board members declared that they are disabled, 49% of boards do not have any disabled members, and only 10.6% have more than one.
We are supported by the WDES team financially and have worked closely with senior figures in the NHS. We are pleased with our national profile and our achievements so far including establishing mentoring support for recently appointed and aspiring disabled directors, developing a good practice toolkit in relation to the recruitment and retention of disabled colleagues and raising awareness of disability issues throughout the NHS. We are very aware that there is still much to do.
I always try to look forwards not backwards and to focus on what I can do and not what I can no longer do. Being able to work, is vital to my mental wellbeing.
We are always keen to attract new members to DNDN. If you would like to know more please see our website.