A different kind of brainstorm

This article was kindly provided to us by the Metropolitan Police Service Disability Staff Association and first appeared on the MPS intranet

March 26th was Epilepsy Purple Day. Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness. Last year, people in more than 85 countries on all continents participated in Purple Day. The origins of Purple Day go back to 2008 when Cassidy Megan created the idea of Purple Day in 2008, motivated by her own struggles with epilepsy. Cassidy’s goal was to get people talking about epilepsy in an effort to dispel myths and inform those with seizures that they are not alone.

So what is epilepsy? It is defined as a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain. The brain controls the way we function, Inside the brain, millions of nerve cells (neurones) pass messages via electrical signals to each other. During a seizure these electrical signals are disrupted and this affects how you feel or what you do while the seizure is happening. Epilepsy is usually only diagnosed after a person has had more than one seizure and not all seizures are due to epilepsy.

Epilepsy can happen to anyone, of all ages, races and social classes. UK statistics suggest that epilepsy affects around one in every 100 people in the UK. Every day, 87 people are diagnosed. One in every four people newly diagnosed with epilepsy are over the age of 65. One in every 220 children will have a diagnosis of epilepsy. That’s an average of one child with epilepsy in every primary school and 5 in every secondary school. There are around 60 different types of seizure and a person may have more than one type. Seizures vary depending on where in the brain they are happening. Some people remain aware throughout, while others can lose consciousness.

Photosensitive epilepsy affects 3% of people with epilepsy. In this type of epilepsy, seizures are triggered by flashing or flickering lights, or some patterns.

The consequences of an epilepsy diagnosis are severe and wide-reaching, It can also affect someone’s education and employment prospects, and lead to an increased degree of social isolation. For more information please see the links below.

One of the networks within the DSA is the Epilepsy Support Network who provide Peer to Peer support, sign posting and a listening place for those living with Epilepsy. Stephen Lewis Is Lead of the Network and has written about his journey.

A different kind of brainstorm

It was the week before Christmas 2011 and I had collapsed in my kitchen. I woke up in the Intensive Care Unit and spent six hours being checked over by doctors who said they thought I may have had a seizure. I was 36, and the idea of having had a seizure seemed a universe away from where I was at that time. I remember my New Year’s Resolution was ‘To Take Every Opportunity That Came My Way’, so when the London Marathon ballot came out as it does every year at work, I sent in my email entry fully happy that I had stuck to my resolution.

Only trouble was they picked my name out, so now I had to run a marathon, and the farthest I’d ever ran before that was about three miles at Hendon back in 2002!

During the next four months I was sent to professionals and neurologists, examined and probed more than an alien abductee. In between this I had more seizures and they put me on a course of medication that made me very sick. I couldn’t believe medication to help you with seizures would give you nosebleeds, stomach cramps, acne and make your hair fall out!

I remember one appointment with my neurologist – he was telling me that they had found a shadow on my MRI scan and an abnormality on my brain. It was called Cortical Dysplasia and this occurs when the top layer of the brain does not form properly. Technically I’d had it my whole life and on that day in 2011 my brain went to send a signal from one part of my brain to another and the fuse broke. That’s how I explained it to my children, who were so young at the time. They came up with a really great name for it, they called it a ‘glitch’ and when I showed them the MRI scans they thought it was brilliant.

But I wasn’t always so open – I did hide a lot of things from my family. Both my Mum and Nan were alive back then and I didn’t tell them that dysplasia is a lesion on the brain, a growth that once discovered has to be checked and measured to make sure it isn’t growing; or that my neurologist did have initial concerns as to why a perfectly fit 36 year old male with no hereditary illness or previous condition should suddenly start having seizures. My Mum and Nan were upset enough to know I was unwell, and there was no way I was going to worry them further.

So in between all of this I was trying to navigate my personal life: work out how to get around without a car, get to see my kids at the weekend using buses and trains. And figure out what the rest of my life was going to look like in amongst all the tests, seizures and medication side effects.

Then came work, which started off with very supportive and line managers and Occupational Health worked to help me be able to still have a meaningful role. But as with all units, people move and the replacement line managers were not so caring or at all supportive. I tried many times to explain my condition to them, but no matter how or what I tried to do to get their help, I can only describe my time working with them as a horrible experience, when all I had done was become ‘very ill’.

During this time I started the Epilepsy Support Network as a way to focus my energies, to help any others who may find themselves with my condition and need help and also as a place to keep all my information in one place. That was when I became involved in the Disability Staff Association and realised that there was a lot of support for officers who were also suffering from similar situations as I was, including a great deal of information on a lot of other subjects.

Since then I have been fortunate to work with some very kind and amazing people, who have who have helped me to grow stronger and utilise my skills so that I can work to the very best of my abilities. I am involved with the Blue Light Champions Network, I am a Mental Health First Aider and assist a number of other staff associations within the Disability Networking strand. I also work on the local Wellbeing Team and I am extremely fortunate to work for a very supportive Senior Leadership Team who have the health and welfare of their officers and staff at the forefront of their minds.

A lot has changed in nine years and I am very proud to have been a small part of that change.

Oh, and just in case you were wondering – I did run the Marathon in 2012 and finished it in 6 hours, 9 minutes, 12 seconds.

Take care. ∎

epilepsy.org.uk
epilepsysociety.org.uk
purpleday.org

National Inclusion Survey reveals disabled staff concerns

Analysis of a survey of more than 34,000 police officers and staff found a need to address concerns about career progression and derogatory comments around disability and other protected characteristics, as well as evidence of inclusive teams and endorsement of efforts to tackle bias.

The National Inclusion Survey was conducted in November 2019, providing the first national employee-led assessment of workplace culture in policing in England and Wales. The survey, covering 43 police forces, was analysed by the Policing Research Unit at Durham University.

The survey indicated that when individuals feel able to be their ‘true’ selves without suffering adverse consequences, and when they feel that they are genuinely involved in decision-making in their work teams, they have higher job satisfaction, professional commitment, and improved wellbeing.

Key findings indicating the need for further work included:

  • 41% of disabled people experienced derogatory comments in the workplace about their identity
  • 38% of police officers who identified as having a disability felt that this had a negative effect on their career opportunities
  • 29% police officers and 25% of police staff said they have been regularly treated in a condescending manner, interrupted, put down or not listened to at work. Respondents from minority groups reported this behaviour at higher rate than the average.

National Police Chiefs’ Council Lead for Diversity, Equality and Inclusion, Chief Constable Carl Foulkes welcomed participation in the survey, and committed to supporting under-represented groups in career development. On the findings of widespread incivility, he commented: “Our aim is zero-tolerance for derogatory and demeaning behaviour that staff told us causes them distress, anxiety or humiliation.”

Click on the links to go to a summary of the survey findings, or to view a PDF of the analysis by Durham University. ∎

Staff networks – advocates or antagonists?

by Simon Nelson
President | Disabled Police Association

Welcome to the first of my one page blogs this year which I have been publishing every two months, in the hope they will stimulate thoughts and discussion without taking up too much of your busy time. Please feel free to contribute, challenge and share any comments and ideas about the points raised.

I suppose it would be helpful to first explain what first prompted me to become involved in my local disability staff network around seven years ago, and I suspect my circumstances and motivations will mirror those of others. Like many, I had not considered myself to be ‘disabled’ because that label appeared to ignore everything else I was able to do and on the whole I was able to manage the more challenging days myself – much easier to do I might add for those in more senior positions who have greater flexibility around how we work. That said, being open about my challenges and seeking some reasonable support was liberating and I was keen to work with others with similar lived experiences, to dispel misconceptions and improve equality and inclusion for disabled colleagues, as disability had been historically side-lined as a characteristic. I was lucky to lead our network within a supportive and progressive police force and proud that it has now grown to include in excess of 1,000 members.

There is occasionally some confusion regarding the role of staff networks compared to the Police Federation, Police Superintendents Association and the unions representing police staff. The statutory associations perform important official functions on behalf of their members including providing legal representation, and it is indeed a sad statistic that around 45% of the recent employment tribunals at which the Police Federation have supported police officers relate to claims of disability discrimination. Our diverse staff networks are made up of volunteers with lived experience of having protected characteristics and a source of invaluable and informed information to support the retention, recruitment and development of the diverse workforce our service needs.

Unfortunately there is no consistent funding or support for these volunteers meaning the time they are afforded to do this important work and the resources available to them depends on what is negotiable within 43 different police forces. If I had not been granted half of each week by my Force to support me as a national lead it would have been impossible for me to do it. Unfortunately there are also real inconsistencies in terms of how much support with time and funds is offered to some national protected groups, compared with others and whilst recognising the financial pressures on policing remain consistently high, valuing difference is also consistently referred to as a priority? It is interesting that some Governments have decided to fund their national police association positions, understanding the value those who are also members of their communities could have in informing how those communities are served by their police.

There are occasions when I believe some leaders perceive staff networks to be a barrier, yet in my experience they are usually keen to be part of the solution. Only this week a Force taking part in a national programme chose not to accept a local offer of advice and support, before going on to include incorrect information on a slide which caused avoidable offence. I would argue that one of the reasons some previous diversity strategies did not result in real change was due to insufficient engagement with our diverse networks, to ensure informed delivery plans delivered tangible improvements. As a police service we are fully invested in Independent Advisory Groups to shape how we serve our communities and yet we often choose not to adequately support or invest in the diverse knowledge within our service. This needs to change as the pressures on network volunteers has become intolerable in recent years and particularly some of those with disabilities who are becoming increasingly exhausted and having to step down in the face of multiple, conflicting pressures.

The Diversity Equality and Inclusion in Policing Survey Report, published last August by Durham University revealed some shocking findings. These included 41.8% of officers having been subjected to derogatory comments from colleagues regarding their disability, and 29.6% having experienced jokes about their disability. We need the senior leaders of all 43 forces and Police Chiefs Council to stand with us, agree that is wrong and share our determination to make things better by providing suitable and consistent support to the staff groups representing the statutory protected identities – we are neither antagonistic nor apologetic, we simply want to be part of the change we wish to see in our service. ∎