Daring to share

by Simon Nelson
President | Disabled Police Association

Welcome to the third of my bimonthly one page blogs of this year which I publish 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.

For those of you who were not aware, I had a sudden and unexpected diagnosis of stomach cancer following a routine stomach ulcer biopsy which, as a dad of three children under seven and in his thirties, felt catastrophic at that time. Although the survival rates for that form of cancer were not good, it had not spread, and I was otherwise fit and strong enough to endure successfully the six cycles of chemotherapy I started this month in 2004 and eventually, the complete removal of my stomach.

The publication of the Five Trust Tests by PurpleSpace and the start of the Safe to Say campaign has caused me to reflect on the start of my disability journey 17 years ago, and the dichotomy I experienced as a police officer living with his ‘new normal’, wishing to fit in yet needing to adapt to a different life alongside the other 86% of those with disabilities who acquire their condition during their lifetime.

After a year of treatment and recovery I was able to return to work on light duties to the service I loved. I was lucky in that I did not require further medical treatment other than a quarterly injection for the rest of my life, but of course I still had to learn to adapt to the change in my body. To be honest it took around two years to get used to new ways of eating and drinking (a sandwich feels like it used to after a Sunday roast!) but it took around a further three years to work through the impact of what had happened, the new doubts about the future and mourning the physical loss of part of me. A digestive system with less capacity and efficiency combined with less stored energy inevitably leads to increased fatigue as well as constant borderline anaemia and dehydration. Unsurprisingly this can really affect my levels of concentration at times as well as other ways in which I think or speak, but I did not refer to myself as being ‘disabled’.

No one would have guessed from looking at me that I was disabled according to the Equality Act, and as with the many thousands of others with less-visible conditions (we do not ‘hide’ them) we want to fit in and ‘belong’ whilst being afforded compassion and support in order to thrive at work. My home Force has come such a long way from then when disability was almost exclusively associated with illness and the potential for absence. I returned to work and a meeting with Occupational Health was only to agree my phased return to work plan with no discussion about how my life had changed. At times I was mocked when I needed to eat in long meetings, and on the occasions when I started to experience crippling cramps around my back and abdomen I would pretend I was leaving to make an urgent call so I could pace an empty office somewhere for 45 minutes waiting for the pain to ease. One of the most disabling circumstances we experience is not feeling able to go to work as our authentic selves. I was lucky that a few individuals believed in me and encouraged me to become an active operational commander even during the many moments I continued to doubt my credibility and resilience… and still occasionally do.

At that time the Force had an identified ‘Disability Champion’ whose primary interest was disability in the community and there was minimal knowledge or interest in reasonable adjustments, so I knew that being open as being ‘disabled’ could change how I might be perceived and treated – accepting that I hated that label and believed it could affect my future career, I needed to work as my true self. I also wished to play an active part in supporting others who had diverse abilities yet restricted by others who were distracted by what those colleagues were less able to do. This led to me becoming the Chair of our local network, and eventually the national lead of our Association, which is immense privilege. We have a way to go in terms of disability being valued as much as some other diverse characteristics and in some meetings I still have to push to make our voice heard, feeling at times like I am the wasp at the picnic! However, we are making progress.

The Five Trust Tests should be commended to all organisations and clearly sets out what it takes to secure the confidence of their staff , including active support for staff networks, so those who are mentally or physically different can dare to share their identity of living (not necessarily suffering) with those conditions (not necessarily illnesses). It takes more than identified champions, policies and campaigns to achieve that and police forces will benefit from being seen to ‘walk the talk’ before those staff trust there is a psychologically safe environment within which they can bring their true selves to work and be supported to fulfil their potential. We have the opportunity to ensure others are now supported and included, and I will certainly continue to play my part by laying a path for others. ∎

Fit to serve

by Simon Nelson
President | Disabled Police Association

Welcome to the second of my bimonthly one page blogs of this year which I publish 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.

This time I will share some of my thoughts on the police fitness test, fitness in general and our service commitment to staff wellbeing. This has been the subject of much debate recently including the #WeCops discussion and the important gender perspectives raised by Team #BleepKind on Twitter. During my 27 years of police service I have experienced many positive changes, including the greater awareness and support for wellbeing at a local level and through Oscar Kilo. For many years prior to the introduction of the Job-Related Fitness Test (JRFT) and the Alternative Job-Related Fitness Test (AJRFT) the vast majority of police officers maintained their physical fitness through professional pride, however many including myself had not previously considered the importance of investing in our mental health.

In brief, the JRFT was introduced several years ago as a result of a national review. Anecdotal evidence from some Police Chiefs suggested that some forces were struggling to deliver operational policing due to a critical number of their officers not being ‘fully deployable’. It is incredibly important for the police service to be able to discharge its response and mobilisation responsibilities and I do not in any way suggest that a number of officers should be able to chase and restrain, particularly when they join, but I suggest we need to define accurately the actual deployable capacity required. I do not believe a comprehensive equality impact assessment was completed before these substantial changes to Police Regulations were enacted, as it would have identified the significant and disproportionate impact on those from certain protected groups, including those with long-term conditions that result in a substantial impact on their day-to-day lives (disabilities).

The JRFT is a shuttle run between measured distances, requiring the individual to reach each line and turn back in time with an audible bleep which repeats sooner over time. The AJRFT provides the alternative of a treadmill which increases in gradient. There is a lot of technical information relating to the testing of the individual’s oxygen capacity and efficiency which I do not have the space to explain here, but officers are required to reach different levels and duration according to their general or specialist roles. All officers are required to pass the test once a year and if they fail several times they have previously faced the prospect of misconduct procedures or more recently Unsatisfactory Performance Procedures (UPP). Although not enforced to date this also permits a force to remove an ‘X Factor‘ or what is claimed to be an operational element (8%) of an officer’s salary and even exit them from the service under ‘Capability Dismissal‘.

JRFT guidelines actually define the purpose of the test as being a Health and Safety requirement prior to taking part in police safety training, which is the same core package for every officer irrespective of role – we need to consider how proportionate and necessary that is. The test is usually taken on the beginning of day one of the training and the consequences as a result of failure varies greatly across 43 forces. Some allow participation in First Aid training to continue, many send the officer away and others allow a senior officer to assess the specific circumstances of that individual, including any disabilities. Officers who have not shared previously details of their less obvious disability due to being fearful of how they might be treated if they did, have been ‘outed’ by the test and removed from operational duties even though they may be well-respected and effective members of their response teams. Some forces such as my home force have become more measured and supportive in their response to this, including considering reasonable adjustments – others have not.

I am very fortunate in that following the start of my life with a disability in 2005 I have always been able to pass the JRFT since its introduction, however the test is not the motivator for myself and most others to maintain a good standard of fitness. The focus has become the test rather than the importance of being as physically and mentally fit as we can be and in the interests of personal wellbeing. A considerable number of otherwise resilient individuals suffer a disproportionate level of stress caused by having to take the test on the day and these peculiar circumstances sometimes contribute to poor mental health. Now is the ideal opportunity to have a mature conversation about the test, including how our future workforce now has a 35 year career and a normal retirement age of 60, with an even higher probability over time that officers will experience a life-changing injury or illness, as I did. We can still promote fitness and wellbeing whilst ensuring those who can never pass these specific tests are still able to serve their communities with all their experience and many other abilities, I know the public still values.

If we truly value difference there needs to be equity as well as equality, breaking free of some fears and assumptions that those who serve with pride might default to the lowest standards of fitness or ‘try to have the job over’ should the focus shift from testing, to personal continuing professional health development and wellbeing. ∎

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. ∎