Guest Blog: Life in the slow lane

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.

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.

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 Follow Colin on Twitter at @Colin_Paine

Guest Blog: “I am just a normal person with an amazing life”

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

High Court ruling on disability retirements and injury pensions

The High Court has ruled that police officers retired due to disability should not have to be reassessed by a doctor in order to qualify for an injury pension. This follows a challenge by former Cheshire Constabulary officer Mark Evans, who retired in receipt of a disability pension but was later refused an additional injury pension, following a medical assessment arranged by his ex-employer.

The ruling established the principle that officers retired through permanent disablement should not be subject to later medical challenges in respect of their entitlement to a pension.

Futher reading:

Police Oracle article (registration required)
Injury On Duty Pensioners Association article
Analysis by David Lock QC (LinkedIn)
High Court decision (British & Irish Legal Information Institute)