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Why was the Sleep Support Project set up?


For good sleepers, sleep is often low priority on any to-do list, and generally taken for granted that we wake up refreshed in the mornings and doze off at night when sleepy, with the occasional lie-in happening on a Saturday morning.  For someone with insomnia, sleep is likely to be top of that to-do list, above all else; for a person experiencing hypersomnia, sleep may be at the bottom of the to-do list, but it can take a lot longer to complete.  Many of us are not good sleepers and increasingly more of us are living with sleep deprivation as the norm, regularly getting less sleep than we need in order to make ends meet or keep up with life’s demands.

There are also those living with long-term sleep disorders, such as chronic insomnia, hypersomnia, narcolepsy, parasomnias, and circardian rhythm disorders, to name a few.  There are some whose quality of life is significantly impaired due to having tried to live unsupported with a sleep disorder, struggling to keep up with work and other daily demands, whilst experiencing decreasing social circles due to being so exhausted it can be hard to maintain social obligations let alone find understanding friends who have enduring patience for last minute cancellations due to this ongoing fatigue.  It can be lonely and isolating living with a sleep disorder, and takes its toll on any relationship.

Partners of people with sleep issues can also be affected.  Imagine night after night of being unable to share your bed with your partner because their snoring is so loud due to sleep apnoea, you’re contemplating asking them to start sleeping in the garage or resorting to sleeping on the couch most nights.  Or being unable to share a bed with your partner due to them having constant screaming night terrors; or your other half being out at work most nights on night shifts.  Sleep issues come in many forms and poor sleep takes its toll on all aspects of a person’s life.

It is common for most of us to experience occasional sleep issues, or to experience some form of sleep disruption at some point in our lives, often as a result of external stress or life circumstances, such as parenting, stress, work, illness, grief, age, etc.  However, many are living with long-term sleep disorders which can result in serious physical and mental health issues.  Sleep disorders can be genetic, they may have a neurological cause, may be just how we’re wired, may arise due to life circumstances, or they may be a result of mental health issues such as depression, anxiety or trauma.  Too often, unsupported sleep disorders and severe sleep deprivation can trigger physical health complications and mental health issues such as depression, anxiety and even psychosis.

Currently, it can take years to get a diagnosis for a sleep disorder, and frequently patients can initially be repeatedly dismissed by their doctors with a leaflet about sleep hygiene and a prescription for some sleeping tablets or other (potentially addictive) sedative.  For a referral to a sleep clinic, a sleep disorder needs to generally by that point already be long-term, persistent and be having a serious negative impact on a person’s wellbeing or physical health.  Then, the waiting lists for sleep clinic appointments can often take months.  Roll on another year or so and let the tests begin.  It is a worrying time, often with lots of trials and errors with different sleep management techniques, sleep studies, becoming dedicated to good sleep hygiene, trying different apps – all the while becoming increasingly so sleep deprived that work and relationships are further affected.  By the time the sleep disorders are diagnosed, controlled, maintained and improved, it can often be years after onset.

Sleep disorders are widely misunderstood.  It can be frustrating to have to explain for the hundredth time about what narcolepsy is, or that you are living with a neurological sleep issue and that it isn’t a case of fixing it by ‘just going to bed earlier’.  It can be utterly disheartening to have to be telling this to your GP if they have a lack of awareness of sleep disorders.  And it can be terrifying trying to explain it to your boss, so often many avoid doing so, leaving them unsupported in the workplace too.

We need to start taking sleep seriously.  The resulting exhaustion from sleep deprivation can be so dangerous that many car accidents are a result of sleepiness, and ongoing sleep deprivation can become so difficult to live with that it may not even be possible to leave the house for days at a time.  It can be debilitating living with a sleep disorder.  Some sleep disorders are classed as disabilities.  More awareness is needed so that people living with these issues don’t need to feel isolated and misunderstood, so that they can receive appropriate support, flexibility and understanding from their employers, doctors, and the people in their life.

The initial response for dealing with sleep problems generally involves improving sleep hygiene, by going to bed earlier, getting more sleep, implementing mindfulness meditations and relaxing breathing techniques to combat anxiety, eliminating caffeine intake, to self-manage the problem.  There are helpful devices, apps, daylight lamps, blue-light blocking glasses, white noise machines, and intelligent alarm clocks able to attune themselves to personal sleep cycles.  These are all fantastic, innovative ways to help all of us manage our sleep problems and for improving sleep quality, empowering us to manage our sleep regimes as effectively and healthily as possible in this modern age of 24/7 working hours, shift patterns, pressures of working overtime, living beneath constant bright lights, in a state of super-connectedness amid the glare of electronic devices.

But what about those who find themselves unable to self-regulate their sleep or whose sleep often regulates them?  Those long-sufferers unwillingly enslaved to debilitating sleeping patterns or problems?  Too often it seems that these people are overlooked when it comes to sleep support, and these are the people often the most debilitated by their sleep disorder and struggling the most.  It is my view that more support is needed for people living with long-term sleep problems, to support their emotional wellbeing and mental health whilst they endure the impact in different areas of their lives.  And in order to increase this available support, more awareness is really needed about the issues that people with sleep disorders face.  So, the Sleep Support Project was set up, aiming to create awareness about all aspects of sleep, and to offer emotional support via one to one counselling, CBT-i, support groups, workshops, and the website.