Background
Mortality rates are higher for people with mental health difficulties than the general population; this is also true of people with a learning disability and autistic people.
The median age at death for people with a learning disability is 62 years (Learning from lives and deaths – people with a learning disability and autistic people (LeDeR) annual report 2021); this is over 20 years younger than for the general population. People with a learning disability also have higher rates of death from avoidable causes than in the general population (49% versus 22%). Delayed assessment can contribute to poor outcomes, as can diagnostic overshadowing and unconscious bias amongst clinicians and patient difficulties in communicating about symptoms and reporting pain.
It is important to protect people from health inequalities and premature mortality and therefore physical healthcare needs should remain a key priority in the care of people with a learning disability and autistic people in mental health settings.
The Care Quality Commission states that people with mental health needs should receive the same level of care as any other members of society; this includes:
- providing a timely medical assessment to ensure that a physical condition is not causing the mental health difficulties
- investigating poor physical health and appropriately care planning
- recognising, responding to, and appropriately escalating acute physical deterioration, injury, or pain
- assessment and management of long-term health conditions
Recent safeguarding investigations have highlighted this does not always happen for patients with obstructive sleep apnoea (OSA) in mental health inpatient settings, which has resulted in the deaths of people with a learning disability and autistic people due to continuous positive airway pressure (CPAP) machines not having been used as prescribed.
This document aims to help staff within mental health settings recognise the importance of putting appropriate supports in place for people with known or suspected obstructive sleep apnoea (OSA), including those on CPAP treatment, throughout their mental health admission.
What is obstructive sleep apnoea?
With sleep onset, including when promoted by alcohol or sedative therapy, the muscles of the upper airway relax. In predisposed individuals (ie those with a small mouth, obesity, enlarged tonsils – especially in children – and those with either a small and/or receding jaw), the airway may narrow to a critical level (hypopnoea) or block completely (apnoea).
These episodes of apnoea or hypopnoea last for 10 seconds or longer in adults and, if they occur frequently during sleep, may produce a variety of effects. The episodes are terminated by the individual briefly waking (arousal) before then falling asleep again, with the cycle repeating throughout the sleeping period.
Such events are often associated with drops in the oxygen level to surprisingly low levels. Although there is no threshold, the National Institute for Health Care Excellence defines this sleep apnoea as ‘mild’ (less than 15 events per hour), ‘moderate’ (15 to 30 events per hour) or ‘severe’ (more than 30 events per hour).
Obstructive sleep apnoea can be common in people with a learning disability, in particular people with Down’s syndrome.
Symptoms
The symptoms of sleep apnoea are varied but usually include:
- loud snoring
- witnessed pauses in breathing terminated by ‘grunts’
- frequent arousals, leading to intrusive daytime sleepiness, poor memory, irritability and low mood. In some individuals (especially children) there may be hyperactivity and, for some adults, insomnia
- related to pressure swings in the chest there may be frequent passing of urine at night and nocturnal palpitations or onset of cardiac arrythmias.
The development of the above symptoms is often gradual with many people experiencing them for many years, which can be exacerbated by weight gain or the introduction of sedative medication.
Untreated individuals may fall asleep while driving or operating machinery and often will sleep in company causing family and personal distress. Medically untreated obstructive sleep apnoea is associated with hypertension, cardiac arrhythmias and other heart problems, which can result in premature death.
Assessment and diagnosis
Some people with a learning disability and autistic people may not be able to express that they have a sleep problem and so identification may need to be based on observations or information from carers.
If symptoms are noticed, then consideration of referral to a hospital sleep service for more formal assessment should be considered.
Episodes of apnoea or hypopnoea are determined by a clinical assessment called a sleep study, usually performed in the individual’s own home and analysed by technical staff. When taken in conjunction with symptoms, the findings lead to different treatment options.
Untreated obstructive sleep apnoea (OSA) can impact on mental health as well as causing significant risks to physical health, therefore assessment and treatment for OSA should be prioritised for those affected, including those in mental health settings.
Treatment
Treating reversible factors such as weight gain or new medications should be considered first, together with improving sleep hygiene. However, for many patients with significant symptoms and moderate or severe obstructive sleep apnoea (OSA), a device to bring the jaw forward may be considered, depending upon the features on inspection of the mouth, but the most effective treatment is continuous positive airway pressure (CPAP)
CPAP consists of a small machine that blows a large volume of air through tubing, to a snugly fitting mask. This high volume of air creates a slight increase in pressure in the upper airway and thus splints open the airway, preventing collapse and thus treating OSA. Although a strange feeling initially, hospital sleep services are well versed in finding the correct pressure setting and mask to make the use of CPAP as comfortable as possible.
CPAP is not a cure but, if used every night, is very effective at reversing the symptoms of OSA. It is therefore very important to use CPAP consistently and people should be encouraged to both put the mask on and use the CPAP throughout the night. If there are any issues with mask leak or discomfort, then the hospital sleep service that issued the machine should be contacted (the next working day) to correct the problem.
Risks of non-compliance with continuous positive airway pressure (CPAP) treatment
If people do not use their CPAP machine, as well as experiencing ongoing symptoms of obstructive sleep apnoea, there is a risk of serious health problems including increased blood pressure, risk of having a stroke, developing diabetes or dying with heart disease. Staff within mental health settings should ensure that CPAP users are compliant with treatment as prescribed and support them to access a timely review via the hospital sleep service to resolve any difficulties.
Continuous positive airway pressure (CPAP) for people with a learning disability and autistic people
People with a learning disability and autistic people with obstructive sleep apnoea (OSA) may be at increased risk if they or their carers do not understand the importance of consistently using a CPAP machine.
It is possible to issue a CPAP machine that has the capability of both monitoring how regularly it is used and making remote adjustments. It is strongly recommended that people with a learning disability and autistic people are issued a CPAP machine with remote monitoring capabilities, due to their increased risk of premature mortality and to potentially reduce the frequency of required attendance at the hospital sleep service clinic.
Staff supporting CPAP users in mental health settings should:
- advocate for people with a learning disability and autistic people with OSA to be issued a CPAP machine with remote monitoring capability
- contact the hospital sleep service immediately if people are not using CPAP consistently and request a review (either by interrogation of remote data or via a telephone or face-to-face consultation).
Reasonable adjustments (for example, longer appointments, extra time to support CPAP use) should be made to support engagement with assessment and treatment. It would be helpful to share our easy read guides and carer guide, to help patients and families understand the importance of treatment.
It is also important that compliance is reviewed within annual health checks for people with a learning disability and autistic people with OSA.
Lifestyle advice
Smoking, alcohol use and excess weight can contribute to the need for continuous positive airway pressure treatment. Supporting people to develop a healthy lifestyle through exercise and healthy eating can improve mental health and reduce risks to physical health. Other lifestyle changes such as cutting down on alcohol, stopping smoking or medication review can also help.
People with a learning disability who lack capacity to make decisions about diet, exercise and weight management must be appropriately safeguarded against the risks associated with excess weight. A formal safeguarding alert should be raised where neglect has manifested in the form of obesity.
Managing ligature risks
It is very important that routine risk management policies and procedures, particularly those relating to the management of ligature risks, are applied in relation to continuous positive airway pressure (CPAP) machine use for patients where there is a history or risk of self-injury or suicide. This should be balanced against the potential risk of not using CPAP, which has been associated with premature death. Consideration should be given to taking action to mitigate either or both of these risks.