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

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. ∎

Disability History Month

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

Today marks the end of Disability History Month, which began on the 18th November. To mark the occasion, we spoke to the Chair of the MPS DSA, Detective Sergeant Dave Campbell, and to two serving disabled officers, DC Stephen Lewis and PC Phil Lewis, about their experiences in the organisation.

DS Dave Campbell

Up until the 1950s, people with physical, mental and learning disabilities were often ignored by society and access to jobs and support was practically non-existent, unless individuals were prepared to be exploited, undertaking menial and degrading tasks which offered little in the way of subsistence. Support was mainly through families as very little was provided by the authorities. Unfortunately, many of these outdated social attitudes and stigma still exist today in some form.

Certainly in the police service, people were often pensioned off for being ‘worn out’, ‘mentally debilitated’ or ‘debilitated due to injury’. These terms covered a wide range of injuries, but essentially if you could no longer walk the beat or place hands on prisoners, you were pensioned off.

Society had limited tolerance or understanding of disabled people, who were often seen as third-class citizens, shunned by their peers who had to endure socio-economic deprivation and abuse, with little chance of accessing public service assistance. Few believed that public expense should be used to assist. If you had a mental illness or a neurodivergent condition, you were more susceptible to being placed in an institution or in extreme cases, used in the name of medical science.

The First World War brought a level of disability awareness to society on a mass scale when many troops returned home with physical and mental disabilities, like blindness, loss of hearing, loss of limbs, mental trauma (PTSD) and loss of various bodily functions. The care provided to returning troops highlighted inequalities and deficiencies in our care of disabled persons but unfortunately it would take 70 years before significant changes in our attitudes took place.

Attitudes did start to shift by the end of the 1960s as it became clear that the quality of care in long-stay hospitals, the responsibilities of local authorities and health care in terms of disability (particularly mental disability) was often extremely poor. With the civil rights movements of the 1960s, it was identified that disabled people also had a right to expect a level of support and care as part of their rights, just like the non-disabled population. Parental pressure and civil rights groups became an important influence in pushing for change.

However, these changes although progressive, did not significantly change the plight of disabled people in the UK. Having had personal experience of growing up with a severely mentally disabled sibling, I was appreciative of the efforts and dedication my parents had, not to give up their child to the socially-inept attitudes and support of the day, by resisting the offer of incarcerating my sibling into one of the many institutions that existed, despite the changes in law.

On top of that, the level of care for disabled people in those institutions were short of what we expect today, and many were subjected to abuse and hate crime, which went largely unreported. I directly witnessed this and the impact it had on my parents in the 1970s despite changes in law.

The Disability Discrimination Act 1995 came into effect in December 1996, making it an offence to discriminate against a person on the grounds of disability. Towards the end of the 1990s, a number of individuals in the MPS set up a staff association with the intention of supporting disabled staff.

The MPS DSA was set up to deal with those challenges and obtain better recognition in the work place, by supporting people and acting as a critical friend to influence, change policy, culture, procedure and working practices. The DSA has gone from strength to strength and now has 24 different peer-to-peer support networks who provide support and guidance for members, as well as working with me within the DSA to take up the challenges faced by our colleagues who have a disability.

DC Stephen Lewis

I have been a police officer for 18 years, three years in uniform and 15 years as a detective. In 2011 I had a seizure at home and was diagnosed with epilepsy in early 2012. I was placed on restricted duties, and later adjusted duties. While doctors and other specialists tested me for brain tumours my life changed completely, both personally and professionally. While I was trying to come to terms with all of these changes, I initially had supportive management. However, as often happens at work, people move on and in this instance my management were replaced by some individuals who were not at all supportive of me and my condition.

Due to the side effects of my epilepsy medication, I started to lose my hair. One supervisor ‘joked’ that I looked like I was wearing a wig. At times, I was in so much pain I couldn’t get out of bed or was so tired from repeated seizures I’d struggle to stay awake. I felt there was a real lack of understanding from some of those in management roles, which was stressful and did nothing to help me adjust to my condition and new life.

I was blessed to eventually meet some excellent people: wonderful kind-hearted managers who treated me like a person who just happened to be unwell. They wanted to understand what I was going through, so in turn they could help me when I was ill. It’s hard to keep hearing “My partner has epilepsy and then can do…” or “You don’t look sick” or “It can’t be all that bad” or “There’s no way it does that” – every individual’s experience of epilepsy is unique.

I now work in a wellbeing support team which is very rewarding. Being on adjusted or restricted duties should simply mean that – carrying on policing duties with some changes. As a team, we work with individuals affected by such changes and ensure they are found meaningful roles across the BCU, which of course benefits both the organisation and the individuals themselves.

I also founded the MPS Epilepsy Support Network to educate people and help others who may find themselves in similar situations, including enlightened line managers who are seeking to support their staff, who have been diagnosed with epilepsy.

PC Phil Lewis – SO15 Counter Terrorism Command

I have a disability to my left hand: that’s to say I have no fingers but only a thumb. When I applied to the MPS nearly 20 years ago, I’m sad to say I was treated very poorly by the organisation. Suffice to say I joined a constabulary outside London who treated my disability far more positively.

Fast-forward 20 years and things could not be more different in the MPS with regards to both disability and diversity. Yes, there are still areas for improvement but the organisation is light years away from where it was at the turn of the Millennium.

After a number of years outside the MPS, I took some time out of policing and then re-joined the MPS. One of the areas I was keen to develop was my public order training. I attended a disability assessment at Gravesend: the instructors were superb and I was then able to attend public order training. I’m now proud to be a trained Public Order Officer.

I have had various fittings and measurements with our uniformed services who have then been able to make bespoke gloves for me for both Public Order and normal daily duty.

I recently attended and passed a Taser course and an additional covert Taser carriage course. Once again, the instructors were brilliant. I think that I am the first officer in the country with my kind of disability to have passed this course.

I am very keen to develop my skills in numerous other areas and have had successful disability assessments which will enable me to attend further courses in the future, for example an Authorised Firearms Officer course, and advanced driver training at Hendon Police Driving School.

It is especially pleasing for me to see how attitudes have changed for the better and how my supervisors and managers within SO15 have been so supportive. I have no fear that my disability is judged negatively and I am able to come to work every day without having to worry about it – the end result is that I am fully able to focus on my job. Hopefully I can also inspire others with a disability – someone I spoke to recently said: “Speaking with you has really inspired me to consider my career and realise that even with medical issues, there’s a lot I can achieve. So, from me to you, a big thank you for that.”


A timeline of Disability History Month

1919 The Central Council of Care was set up and consisted of medical professionals for the care of returning soldiers with a narrative to cure soldiers as well as reduce the burden on society, which reflects the views of society at that time.

1920 The Blind Persons Act 1920 was passed as a result of pressure to provide better provisions for people who were blind, predominantly from the ravages of a world war but would benefit people who had been born blind or non-war related blindness. That year a national reform group was set up for changes in mental health legislation which would ultimately lead to repeal of the Lunacy and Idiots Act, and the induction into law of the Mental Treatment Act (1930) which moved away from institutions and a more pragmatic approach to outpatient treatments and observation wards.

1944 The Disabled Persons Employment Act set up a quota system requiring employers with 20 or more employees to ensure that at least 3% of the workforce provided roles for the disabled. This was a major move forward and also culminated with the Education Act which had provisions for disabled persons, accepting that mainstream schools were an appropriate environment for disabled persons to learn.

1948 The National Health Service was launched by Aneurin Bevan, the Secretary for Health under the Labour government, marking a significant change in the welfare of people’s health in terms of free prescriptions, and treatments which hugely benefited disabled people who were still impacted by socio-economic and public attitudes.

1960s to early 1970s Successive Labour and Conservative governments produced several White Papers on access to services and support for disabled persons. This resulted in the Local Authority and Social Services Act that was the start of Social Services and obligation of local government to provide care and facilities for disabled persons. This was followed by the Chronically Sick and Disabled Person’s Act, which was the first legislative step in the world that recognised the rights of disabled persons. This enabled authorities to provide housing, Meals on Wheels, adaptions to homes to make living spaces more accessible so that people had a sense of independence, such as inside bathrooms and raised toilets, support bars and Home Help. It provided equal access to educational facilities for children who were blind, deaf and later extended to neurodivergent conditions. Public buildings for the first time had to provide toilet facilities for disabled people, and disabled parking badges were introduced for accessible parking and other access.

1972 The Conservative government introduced a Disability Minister, with Alf Morris being the first recipient of that role.

1981 The United Nations designated the year as International Year for Disabled People. Disabled people did not play a large part in most of its key events; their response was to challenge the ‘for’ of the Year and insist on the ‘of’, aiming at self-organisation. Disabled People’s International is formed this year and now has consultative status with the United Nations.

1986 The Disabled Person’s Act strengthened the provisions of the 1971 Chronically Sick and Disabled Persons Act, going further to strengthen the responsibilities on local authorities to support disabled persons.

1992 The Disability Living Allowance was introduced which provided financial support to disabled persons.

1995 The year often regarded as the turning point for disability in the UK, when a large number of disabled people converged on London to protest against inequality and discrimination on the grounds of disability. This was well publicised at the time, and it was probably the first time that disabled people nationally protested in such a public way against a government. There was wide spread disruption of public services and businesses.

1996 The events of the previous year led to the White Paper and eventual passing into law of the Disability Discrimination Act 1995, which came into effect in December 1996. The Act made it an offence to discriminate against a person on the grounds of disability. It was a significant turning point in the battle for equality for disabled people. It also applied to employers and employees where business were over a certain size.

2001 The Special Educational Needs and Disability Act came into effect, extending discrimination to cover education providers.

2004 The MPS DSA became an official association within the Metropolitan Police and was recognised by the then Commissioner.

2005 The Disability Discrimination Act extended protection to land, small employers and private clubs, but most significantly made it a duty of public bodies to promote disability equality and involve disabled people in the design of services, policies, practices and employment opportunities.

2010 It became apparent that the Disability Discrimination Act did not go far enough to protect the rights of disabled persons and inequality was still rife in the work place and in society in general. With this in mind, the government introduced wider disability discrimination laws and incorporated them into the Equality Act 2010. The Act encompassed all minority and ethnic groups, introducing the concept of ‘protected characteristics’. This made it unlawful to victimise or harass people on the grounds of disability. It also defined the concepts of direct and indirect discrimination as well as discrimination through association to a disabled person.

Disability facts & figures

Disability is rich with intersectionality across all protected characteristic groups, is often overlooked and regularly underplayed, and more often than not largely ignored. The Office of National Statistics show that 18% of working age adults in the UK have a disability. At the last census there were approximately 13 million people who had a disability. 90% are not born with disability, 83% of disability is hidden and 60% of disabled workers choose not to share with their employers that they have a disability. Looking at the figures further 1 in 4 have a mental health condition, 1 in 6 are likely to have a neurodivergent condition, 3% are likely to have impaired sight or are blind. 15% of disabled persons are likely to be deaf or have a hearing impairment. ∎