Musings of a police officer on a diagnosis of ME/CFS

Colin Paine is a Detective Chief Superintendent in Thames Valley Police. He is currently working on the Police Spending Review with the NPCC. Here he reflects on his diagnosis of Myalgic Encephalopathy (ME)/Chronic Fatigue Syndrome (CFS).

Police work feels inherently fast paced. It is in the nature of our work that we are often ruled by the tyranny of the immediate. The demands are endless and our resources are finite. It is no surprise that many of us, particularly those in leadership, end up working long hours at a frantic pace. This is a necessity of our environment, but perhaps the time has come to ask whether working this way is sustainable, healthy or always adds as much value as we might think.

I had pause to consider this when I fell ill with ME/CFS. Many in the police service will relate to the sense of feeling ‘tired all the time’, particularly with shift work, high workloads and on call. However, most will not have ME/CFS – which takes this sense of fatigue to an entirely different level. Many of those with ME/CFS are housebound and a significant proportion are unable to work altogether. I experienced this extreme weariness in the first months of illness. I struggled to walk short distances, slept 14 hours a day and then eventually work became impossible. Like an old smartphone, I needed to be recharged several times a day just to keep the most basic functions going.

Giving up the fight
The recovery rate from ME/CFS is dishearteningly low, with just 5% making a full recovery . There is no cure available, and the treatments available have mixed results. To begin with I believed that by sheer force of will and determination I would be able to fight and defeat this dark malevolent fatigue; how wrong I was! I read the research extensively and tried numerous treatments without success. As time passed I began to realise that the metaphor of a fight was just wrong – to suggest it is a battle suggests that those who remain long-term housebound are just not fighting hard enough – which is manifestly unfair. Instead of seeing it as a fight I began to realise that this is a journey; a journey I had not chosen to go on, and indeed a journey I would rather not travel – but one that would provide me with opportunities to learn and develop along the way.

Value added horizontal leadership
After months off work and dozens of visits to the doctor I was eventually diagnosed with ME/CFS. With the kind support of my Assistant Chief Constable I returned to work, initially on reduced hours. I lacked the energy to get into work – so I worked lying down at home. It felt like I was travelling in a canal boat watching my colleagues hurtle along a busy motorway. I was asked to tackle some of the perennial thorny and insoluble issues that had troubled our Force, such as ethical decision making in non-recent child abuse cases and more recently to work with the Home Office on the Police Spending Review. I couldn’t work for eight continuous hours so I worked for an hour or so and then rested before getting back to it again. What I learned was that although I could not manage the normal duties of a Chief Superintendent I was nevertheless able to add real value – but in a completely different way. Normally my diary would be packed and my phone ringing constantly. Instead my condition enabled me to undertake deep work; thinking about some issues at a level that had not previously been done. With colleagues and academics we identified new ways of thinking about traditional problems; new thinking that could save millions and potentially be adopted nationally. In the normal fray of policing, this would never have been possible.

Technology
The modern working environment, aided by technology, has blurred the boundaries between work and home life. This blurring depletes us all; taking calls at home, checking emails in the evenings and being contactable when on leave is not healthy. However, my experience of illness is that technology has been an enabler. Being able to work remotely on a laptop and undertake meetings through conference calls has preserved energy that would otherwise have been wasted on commuting. Research shows that those who work remotely are frequently more productive than those office based; this is surely no surprise, as the lack of distractions enhances focus. The Service needs to focus on the benefits of remote working for both productivity and for the wellbeing of our people.

Marginal gains
My health has improved significantly over the last 18 months. I am now able to walk significant distances and work full hours; albeit with a number of rest breaks throughout the day. The marginal gains approach, made famous by the British Cycling Team, has been essential in making progress. I have re-examined each element of my life and sought to make small, but meaningful improvements in each area. I have adopted a pacing approach; pacing is striking the balance between activity and rest, doing something for a while then deliberately resting, whether I feel fatigued or not. My wife got us a little dog early on in my illness, which was been a blessing as he needs short walks each day. I have learned the value of good sleep hygiene as Matthew Walker outlines in his excellent book “Why We Sleep”. I have learned to place the utmost value on dietary nutrition and have recognised how convenient processed food further depletes energy reserves. These are all lessons I wish I had learned long before falling ill – lessons the Service is only now waking up to.

Time management vs energy management
Much has been written in recent years on the value of time management, but this has taught me that it is energy management that is paramount. Energy is the most precious resource we have; it is the petrol in the engine – without it we are going nowhere. We all have a finite amount of energy available (although I have less than most), so learning to optimise it is critical. With ME/CFS my energy levels fluctuate and are often unpredictable. However, I have learned that there are predictable peaks and troughs throughout the day and week. I do the most challenging work during my times of peak energy and administrative work during troughs. Learning which activities (and people) energise and deplete us is essential to maintaining energy levels. Being intentional in planning activities to prioritise and those to bin is critical to our health and our productivity. I have also learned that breaks are not a deviation from performance, but they are a critical part of performance; those people who take regular breaks perform better than those who don’t, as Daniel Pink explains in his book “When”.

Being intentional in planning activities to prioritise and those to bin is critical to our health and our productivity. It can be difficult for those in leadership positions to say “no”; most leaders have got where they are by seeking to be positive and obliging, but saying “no” is critical to our success at work. The culture of policing is ‘can do’, but it is only by saying “no” to lower priority activities that we can ensure delivery on the most critical work. A positive and supportive “no” is always more productive than a weak and resentful “yes”. I am increasingly minded that we should focus our limited energies on those areas in which we can add unique value.

The National Institute of Health and Care Excellence (NICE) estimates the incidence of ME/CFS to be between 0.2-0.4% of the population, which would put the numbers in the UK at up to 250,000. ME/CFS occurs more frequently in women than men (ratio of 2 to 1) and the peak age for onset is between 20 and 40. There is no data on the incidence of ME/CFS within the police service. However, based on the prevalence within the general population, potentially between 400 and 800 people within the police service suffer with ME/CFS – the size of a small Force.

Mental health
The physical health challenges posed by ME/CFS come with associated psychological challenges. I felt acutely guilty, embarrassed and anxious after falling ill; which ironically further depleted my reserves. Learning to accept these feelings and manage the ceaseless and brutal voice of the ‘inner critic’ has been as big a challenge as managing the physical symptoms. I have learned to just make friends with the constant low level sense of guilt for having fallen ill, and an unrelenting anxiety that if my health deteriorates I might not be able to work. When I first fell ill my daughter said, “Dad, you are always here – but you are never here”. Learning to meditate (thanks to the Headspace app) and spot the cognitive distortions associated with anxiety (grateful to David Burn’s excellent book “Feeling Good”) has been transformational. Taking the long view and seeing my current health as just a stage in my career has been helpful. I am tremendously grateful for the handful of great colleagues who have stood by me. Ultimately I’ve had to learn the paradox of simultaneously developing a Zen acceptance of my limitations, and concurrently keeping the determination to keep moving forward in whatever small ways I can.

Leadership
I’ve been fortunate in having the best of line managers throughout. Even if they have not always understood the condition, they have always listened and cared. Line management is often a lottery – on this occasion it has been a lottery I have won. Leadership is not required in the good times; it is when things get difficult that leadership is critical. Without the kindness and support of my chief officers I would not have made it this far. It has caused me to reflect on my own leadership journey and realised that I haven’t always been as compassionate towards others’ health challenges as I now wish I had. This experience of poor health has transformed my outlook in ways that I could never have expected. It doesn’t matter if you don’t understand the health challenges others are going through – whether physical or mental – what matters is that you listen, empathise and care.

My health has improved immeasurably over the last 18 months. However, my experience of ME/CFS has been transformational and has unquestionably made me a better leader. It has been a difficult and occasionally bitter journey – but one that has taught me more than I could ever have learned on a leadership course. I’ve learned that even with a debilitating condition it is possible to add significant value to the Service; and even though I may fit the Equality Act definition of disability I continue see myself as being highly able. I hope that by speaking out about my experiences of illness I can offer some encouragement to others who may be similarly suffering. Travelling this journey can sometimes feel lonely and isolating, but I hope that by writing this I am able to offer solidarity to those who are also going this way. ∎

Colin Paine welcomes correspondence from others in the service with ME/CFS – email colin.paine@thamesvalley.pnn.police.uk. Follow Colin on Twitter at @Colin_Paine

By Lee Powell
Customer Contact Centre Agent, West Yorkshire Police

“Does it bother me being small? No, I love being small. I don’t think that I am small, I am just a normal person with an amazing life.”

My name is Lee Powell. I am 29 years old and I live with a condition called achondroplasia, which is a type of dwarfism. You may be wondering why I have decided to share my story – well this is because I would like to raise more awareness about my condition and my daily living with the many challenges I face. Most people that I meet ask, “Lee, is your condition genetic related?” and the answer is No. All of my family are average height – my son who is now two is of average height and half the size I am already! My daughter who is due in July is currently measuring as average height, however we are unable to confirm this for certain until she is born.

I was diagnosed with dwarfism at birth, and my parents were more than happy with this – back in 1989 the condition couldn’t be diagnosed from scans during my mum’s pregnancy. Whilst I was living at home, my parents looked for support groups to give them advice and tips, and eventually they found a charity called Restricted Growth Association (RGA) UK. It was when I was 12 years old that I noticed my legs was starting to bow, and I had to go to hospital to get this checked out. I spoke to a doctor who advised that I needed an operation on my legs to rectify this, otherwise I would end up in a wheelchair quite rapidly, and ultimately the decision was mine if I wanted to have the operation. I instantly said no, but two months down the line I thought “I can get time off school, so I will have it done”. I then arranged with the doctor to go ahead with the operation.

The operation date came and I thought to myself “Have I made the right decision?”, and I thought “Yes, with the added bonus of having additional time off school!” I had my operation, and the next day the staff at the hospital advised me not to get out of bed until the Monday; however I stated to them that I wanted to go home, so I got up and did what I needed to do and was discharged on the Thursday. The following Monday morning my dad was like, “You ready for school?”, I was like “Er… I suppose!”, so I went off to school. The recovery process then started, and it was a very challenging time as I need to re-learn how to walk and mobilise, which I eventually did.

After I had recovered fully from my operation, I got involved with the Dwarf Sports Association, an organisation for people with my condition and other types of dwarfism. I initially entered a couple of events for a laugh, and ended up winning a couple of gold medals! I was then asked in 2011 to go to Canada to represent the UK. I thought, “Wow, yes I will go”, and I won one silver medal in swimming and one gold medal in football. I have continued to partake in sports when I can.

With my condition, every day can be a challenge with regards to the pain and the ability of what I can do. For example, some days I can walk and other days I am bed-bound due to the amount of pain I am in. In 2016 I started to suffer with pains in my back which were getting very strong – I ended up becoming paralysed, and my wife requested me to go to hospital to undergo spinal surgery. The spinal operation was carried out at Sheffield hospital and released a couple of trapped nerves in my back. After the operation I was advised by the hospital to stay in for at least a week, however the next day I was discharged as I had done everything that was required of me to meet the criteria to be released. I had to learn how to walk again and mobilise, which was a challenge – however I never gave up, and I managed to get back on my feet shortly after. Currently I am using a walking frame and a wheelchair, depending on the severity of my condition – however there are still times where I struggle to get out of bed.

In 2015 I met my wife Danielle – we eventually got married on TV and had one child. With a second child on the way, to this day I haven’t regretted any part of my life. I must admit though that without Danielle I wouldn’t have been able to walk again.

In 2017 I applied to join West Yorkshire Police as a call handler, and I thought to myself “I have no chance of getting into the police service with my condition”. Once I submitted my application, a couple of weeks later I got an email asking me to come for an assessment and interview. When I was in the interview and the assessment I was made to feel like “Lee” and not a disabled person. Everyone treated me like a person and not someone who has a disability – they asked me if I needed anything changing if I was successful. I advised them that I would need certain reasonable adjustments, and when I started these were put in place without any hesitation or questions. So I then started my journey with West Yorkshire Police.

My wife asked me recently, “Lee how are you finding the police, are you fully enjoying it?” I replied, “Yes I love every minute of it, I am now part of the blue team and should have come to the police years ago.” I am always eager to go to work and I feel like I am part of an amazing team.

I also get asked the question, “How do I deal with my daily life?” I just reply that you only live once, so make the most of it. If you have a dream, the only person stopping you achieving the dream is yourself – everything is possible.

If you have any questions or would like to learn more about my condition, please feel free to get in touch via Twitter at @djweeman89 ∎

by Mairead Clabby
Detention Officer and Special Constable, Merseyside Police

My name is Mairead Clabby. I have been a Special Constable within Merseyside Police for over six years, and a Custody Detention Officer as my full time job for the past year.

Approximately 18 months ago, my Mum told me she had read about something called the Mind Blue Light Programme online, and urged me to sign up as a Mental Health Champion. She knew how strongly I felt about championing equality for those with mental illnesses especially as I have had mental illnesses myself. I have also experienced discrimination towards my depression, anxiety and ADHD, and I felt determined to fight for my rights and others’ rights too.

I read about the programme, and I loved the idea of championing positive mental health support for emergency services as well as challenging the mental health stigma that exists, so I decided to sign up. Over the Christmas period of 2016 I set up a Twitter account associated with my mental health work, and I wrote an online blog post about my past mental illness. I felt very nervous at this point about sharing that part of my life as I was worried people would see me differently, always view me as a victim or as weak, and I also thought others may pity me or discriminate against me, or view me as less competent. Regardless, I felt it to be a risk worth taking. I felt that by sharing my innermost thoughts, it would show others who may be suffering in silence that they were not alone.

I was touched by my Chief Constable’s response:

It also inspired me to drive forwards with my passions to improve quality of life for those with mental illnesses. In January 2017, I signed up as a ‘Time To Change’ Mental Health Champion. Time to Change is a social movement made up of people challenging mental health discrimination and ending mental health stigma. I completed social contact and events training with them at the end of January.

A few days before Time To Change’s Time To Talk Day at the start of February, I noticed our Force did not have any plans to mark the day. At the very last minute, I planned a small event. I set up a desk in the Merseyside Police HQ canteen with resources from my local branch of Mind in Wirral (I used their services when I was depressed during my time at university). It’s unreal how from this very small movement I had many moving, thought-provoking conversations with staff which affirmed my determination to try and improve conditions for police staff, officers, Special Constables and our communities – who experience mental illness directly themselves or via their loved ones, friends or colleagues.

The event was also attended by Chief Constable Andy Cooke, and Assistant Chief Constable Ian Critchley. I was especially moved by the support I received from the Senior Leadership Team, and I talked for an hour exchanging ideas with Superintendent Mark Stanton from Response and Resolution Policing about how to retain staff after absences. It came across how much the supervisors in attendance truly cared about their staff and their wellbeing – this encouraged me.

It also made me assume that I was also preaching to the converted – staff who do not hold any stigma or ill-feeling towards those with mental illnesses and are willing to always build their knowledge, open to ideas by nature. It was inevitable that I would be met with some resistance. Those who were not in attendance, watching critically from afar, would already be raising their guard to my open and vocal promotion of staff welfare. A colleague who attended to oversee my efforts, stated that in their opinion, “talking is overrated” – on Time to Talk Day! To hear this made me wonder if my efforts would ever be taken seriously.

During this time, I was also going through the recruitment process for both full-time police officer and Custody Detention Officer within Merseyside Police. I applied for the Custody role after my police officer role – as I had a gut feeling that my past depression was going to prove an obstacle for me in achieving my dream of being a police officer. I couldn’t explain it – it was just an instinct. As it turned out, it was good sense applying for both.

When I got to the medical stage of my application, an independent GP assessed me as fit to be a police officer – however, the Force Doctor raised concerns and referred me to an independent psychiatrist. They also deemed me fit, but due to me having had depression a few times over the course of my life, recommended that the Doctor could defer me for a year, which he did. Fortunately he deemed me fit to start as a Custody Assistant. In light of this, I decided I would make the most of my year, and more than ever after what had happened, I was determined to prove that past illness is not a barrier to success.

I became a committee member of the Disability Support Network in Merseyside Police, as well as the National Police Autism Association Lead Coordinator. I was approached by a Community Engagement Unit Sergeant with a view for asking for my assistance with launching a Merseyside Autism Alert Card. I joined the Community Engagement Unit as a Special Constable.

During the past year, I attended the National Police Autism Association conference at British Transport Police HQ in London representing the Disability Support Network, and exchanged ideas with other Force coordinators on how to improve conditions for those with autism, autism-related conditions and other neurodiverse conditions in the police service. We were also joined by Cheshire Police Deputy Chief Constable (now Acting Chief Constable) Janette McCormick, who offered great advice on how to make the network and its ideas viable and tangible.

During my time in the Community Engagement Unit, I helped launch the Autism Alert Card in Merseyside and arrange autism Awareness training via our colleagues from Autism Together. A month ago, myself and members of the Community Engagement Unit attended Autism Together’s Autism Champion training, so we are now able to cascade autism awareness training to others within the Force.

“I felt that by sharing my innermost thoughts, it would show others who may be suffering in silence that they were not alone.”

During the past year, I have met with many staff members from Merseyside Police who have approached me seeking help – largely thanks to my very visible and vocal presence on social media – in my capacity as a mental health champion. Each time, I have met with them in cafés and discussed their mental health concerns. The majority felt unable to approach HR or their GP for help – by the end of our conversation, we had made a strategy of how they could deal with their feelings in the here and now and moving forward. More than anything, I was a neutral ear, a stranger, who was there for them and to listen.

I remember a Special Constable who I sat with and talked with, who from our conversation basically needed to take time out. They did – and came back a few months later, where I met them at a Specials Awards Ceremony. It was incredibly rewarding to see them thriving. Their Mum approached me in private at the ceremony to say that their son did not discuss their feelings so they felt especially grateful that I had been there for them when they needed it. This reminds me exactly why I became a mental health champion.

During 2017, I stayed behind after many days of training to become a Detention Officer, to provide mental health awareness training to Special Constabulary supervisors. I also became a trained Mental Health First Aider thanks to Merseyside Police. I was also filmed talking about my experiences with mental illness for a Mind Blue Light video where myself and other emergency services staff in the North West region discussed their mental illnesses on camera to try and remove stigma.

I was also kindly invited to attended a Greater Manchester Police Evidence-Based Policing event, where I learnt about a study examining the effects on detectives who deal with murders in terms of their mental health. I also attended the first ever Special Constabulary LGBT conference in Norfolk and took part in our Liverpool Pride parade.

During the last year, I also joined Merseyside Police’s gender equality working group, Parity 21, and the British Association of Women in Policing. I also worked as a Custody Staff Ambassador feeding back staff concerns to supervision.

I think in the last year, we have moved forward in terms of improved visibility of mental health – for example, Blue Light and strong role models speaking.

In Merseyside Police, I coordinated a Time To Talk Week this year for us with events across the Force. The Chief Constable kindly invited me to appear on his vlog to staff where I was able to promote events such as a free workout for staff at a gym, free mindfulness sessions provided by my father, a Psychiatric Nurse, for response staff, call handlers and HQ attendees, and talks I provided on Mind Blue Light and my own experiences.

My Police Officer application also re-opened in January, and I am now starting as a Police Officer in April. I believe that we still have a lot of work to do. You may have seen Project 84 recently – promoted by CALM and ITV – 84 men complete suicide every week and 75% of all suicides in 2015 were completed by men. This is work that can be carried forward as Mind Blue Light Champions and within Parity 21.

In my year as a Mental Health Champion, the only policing area I have not had any engagement with is Armed Response Officers. Going back to the above, I wonder if this is related to the anxiety surrounding asking for help with a mental health issue – whether this is associated with weakness or incompetence, and the removal of staff from the specialism they love.

I think the only way to keep working towards a workplace where all diversities are celebrated – including mental illness – is by continuing to be strongly visible, by continuing to promote open discussion of mental health in the workplace and by having greater communication and increased bonds between staff, middle management and command supervision. I also think we need to standardise mental health training and approaches to welfare for supervision helping staff to reduce the likelihood of ‘hit and miss’ experiences.

I am very excited to continue promoting mental health awareness, mental health support and open discussion of mental illnesses for emergency services staff and for all members of our communities as I move forward into my police officer role. We have had a wonderful year in Merseyside Police, and I can’t wait for more! ∎