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This publication is available at https://www.gov.uk/government/publications/reasonable-adjustments-for-people-with-learning-disabilities/constipation
This guidance starts with a brief description of how many people have constipation, its causes and how it can affect people. It goes on to describe recent research findings about bowel management to avoid constipation and the management of constipation, including a holistic approach to bowel care and management of constipation.
The ideas, information and examples of good practice in relation to reasonable adjustments provided within this guidance should help services improve provision for this common condition and potentially reduce ill health and deaths associated with constipation in people with learning disabilities.
Symptoms of constipation include difficulty in passing stools, infrequent bowel movements, hard and lumpy stools, stomach ache and cramps. Many people experience constipation for a short time but it can also be a chronic condition. In extreme cases people may also exhibit vomiting, headaches and faecal overflow and people with epilepsy may experience an increase in seizures.
There are 3 categories of constipation:
- primary, where there is no underlying medical cause and largely associated with lifestyle factors
- secondary, caused by physiological conditions such as cerebral palsy, diabetes mellitus
- Iatrogenic, caused by side effects of medications
Diagnosis of constipation is generally triggered by a description of the symptoms. In some cases abdominal radiography may be necessary to confirm the diagnosis.
Symptoms of constipation include:
- infrequent bowel movements
- difficulty passing a stool
- hard stools
- a feeling of incomplete evacuation.
Constipation can lead to serious illness and death.
2. Prevalence of constipation in people with learning disabilities
People with learning disabilities are more likely to suffer from constipation than people without learning disabilities.
A systematic review of 31 studies, published between 1990 and 2016, on the number of people with learning disabilities who have constipation found that:
- there was wide variation in the numbers reported to have constipation due to differences in study samples, the definition of constipation used and the method of identifying constipation
- prevalence was generally high, with rates of 50% or more being reported in 14 of the 31 studies, and 21 studies reporting rates of over 33%
- in the most representative sample, 25.7% of people with learning disabilities received a repeat prescription for laxatives in one year compared to 0.1% of people without learning disabilities
- in one year, 18.8% of people with Down syndrome were prescribed laxatives compared to 3.4% of people without learning disabilities
- constipation was registered as a health problem for 59.8% of people with profound intellectual and multiple disabilities and 65.0% had been prescribed laxatives in the previous year
- inactivity was associated with constipation
- age was not consistently associated with constipation
People with learning disabilities and carers should be made aware of constipation . Doctors should actively consider the diagnosis of constipation in this group of patients. It’s Important that services are equipped with the information and skills needed to manage constipation in this population.
Anybody supporting people with learning disabilities should be aware that they’re at a higher risk of having constipation as they may be unable to communicate this. It is essential to be aware of the signs and symptoms.
3. Causes constipation in people with learning disabilities
People with learning disabilities mainly get constipated for the same reasons as other people. These include:
- inadequate diet and fluid intake
- reduced mobility and lack of exercise
- side effects of certain medications
- anxiety or depression
People with learning disabilities may have conditions that make it more likely for them to have constipation such as:
- poor diet
- reduced physical mobility
- being prescribed medication such as antipsychotic, antidepressant and anticonvulsant medication that can all have a negative effect on bowel movement
People with down syndrome or cerebral palsy have an increased risk of constipation. Other medical conditions that exacerbate constipation include hypothyroidism, depression and diabetes. Recent primary care data has shown that people with learning disabilities have significantly higher rates of diabetes and hypothyroidism and slightly higher rates of depression.
People with more severe learning disabilities are at an even higher risk of constipation. This may in part be related to complex health needs requiring a variety of pharmacological treatments that can contribute to constipation. They’re also more likely to be less active and do less exercise, which is another associated factor. A causal connection with body shape distortion or abnormal muscle tone has also been suggested although the evidence for this is much more anecdotal.
Environmental factors can increase the likelihood of constipation. Inappropriate toileting facilities or a lack of privacy or time to use them can cause constipation. Disruption in someone’s routine or changes to their care or environment can all negatively affect bowel habits. Moreover, ignoring the urge to pass stools can cause constipation. If people haven’t been potty trained when young, and therefore do not respond to the urge to defecate they’re more likely to have constipation.
4. Impact of constipation
Constipation may not be considered a particularly worrying health problem and treatment is usually effective if started promptly. If not treated constipation can lead to more complex problems. As a consequence of continual straining to try to pass stools people can experience rectal bleeding, which may be the result of anal fissures, haemorrhoids or rectal prolapse. Chronic, untreated constipation can be very serious.
Symptoms can include:
- abdominal pain
- loss of appetite
- overflow diarrhoea
- faecal impaction
- faecal vomiting
- twisting of the bowel leading to ischaemia and septicaemia
Symptoms of constipation can be overlooked, with resulting behaviours being attributed to the person’s learning disability. There’s a body of research demonstrating the link between chronic constipation and behavioural problems, including self-harm, in people with learning disabilities. This is perhaps unsurprising given the extent and seriousness of some of the symptoms. It’s important that physical problems such as constipation are considered if someone suddenly starts exhibiting challenging behaviour.
Chronic constipation can lead to many negative impacts on quality of life. In addition to the physical aspects described above, there are also psychological impacts. These include embarrassment, social isolation and anxiety. Long-term constipation is also associated with urinary and faecal incontinence, which in turn can increase social anxiety.
Although the primary negative impact of constipation relates to the individual, there’s also a considerable cost in relation to healthcare services. The management of constipation is expensive in terms of professional resources and prescription costs. It’s been shown that constipation management accounts for 10% of district nursing time. Prescription costs of laxatives have been rising year by year. National statistics show that from 2004 to 2014 the use of laxatives increased by 40.1%, with the cost of laxative prescriptions in England in 2014 being £117.5million.
4.1 Serious case reviews
In extreme cases, the symptoms of long-term constipation can lead to death.
In 2014, the Safeguarding Adults Board in Suffolk commissioned two Serious Case Reviews (SCRs) into the deaths of two people with learning disabilities. Their deaths occurred in the same hospital within a 6 month period and were from complications related to faecal impaction.
The first SCR looked at the events leading up to the death of Richard Handley. Richard had lifelong problems with constipation and also had down syndrome and associated health challenges including hypothyroidism, psychiatric co-morbidity and communication difficulties. He was aged 33 when he died from complications arising from faecal impaction. The review found that despite his physical health problems the only regular health professional input was from psychiatry. The staff that supported him had received no training in monitoring bowel health. Richard was referred to as ‘James’ in the SCR. His family have requested that his real name is used here.
The second SCR was about ‘Amy’ who had epilepsy, cerebral palsy and known bowel problems. She died aged 52 of aspiration pneumonia related to faecal impaction. The review highlighted concerns that the significance of Amy’s bowel problems was lost when she moved between providers and the new service then failed to monitor her bowel movements. Even when there was clear documented evidence that her breathing difficulties were associated with severe impaction this was overlooked by hospital staff. They treated the presenting symptoms and discharged her without appropriate investigation into the cause.
5. Bowel management to avoid constipation
Some of literature suggests that learning disability is a cause of constipation. Despite higher rates of constipation in people with learning disabilities, it’s not a symptom of learning disability and it’s very treatable. There are a variety of pharmacological and non-pharmacological treatment options and there’s a need for a holistic, person-centred approach to the management of constipation.
Emly and Rochester have reported on the development of guidelines for the management of chronic constipation in the community. A multi-professional group worked on these and developed a care pathway.
The approach recommended is a holistic and personalised one. Although laxatives may have a role to play in the management of constipation other approaches and factors should be considered first. Carers often report feeling helpless when the person they care for has chronic constipation but there are practical steps they can be supported to take that will be useful alongside pharmacological intervention. It may be time-consuming but carers and paid supporters can help people with learning disabilities improve their bowel habits and this can lead to a reduction or cessation of laxatives.
A holistic approach requires multidisciplinary input. This may include input from the following:
- family carers/paid supporters
- learning disability nurse
- occupational therapist
5.1 Diet and exercise
Constipation is mainly caused by a lack of fibre, dehydration and inactivity so treatment, and prevention, is likely to require lifestyle changes for the individual around their food and drink intake and movement. Current guidelines suggest that adults should be drinking about 6 glasses of fluid a day. Guidelines also suggest that a constipated person needs 50 to 60ml of fluid per day for every kilogram that they weigh. People who breathe through their mouth, sweat a lot or dribble or drool a lot may need a higher intake. Some foods such as soups and yoghurts may contribute to fluid intake.
People with learning disabilities living in supported communities tend to have poor diets with insufficient intake of fruit and vegetables. There are simple dietary changes that can be made to increase fibre intake. It’s recommended that any increase is made gradually. Sudden increases may result in bloating and flatulence. The diet should be balanced and contain whole grains, fruits, vegetables and pulses. This type of diet is in line with general advice on a healthy diet. Adults should aim to consume 18 to 30g of fibre per day.
Further guidance on a healthy diet can be found in the reasonable adjustments guidance on obesity. NHS Choices also has information and links to easy read resources that can be given to people with learning disabilities.
Lack of exercise slows the natural movement of faeces in the bowel and can lead to constipation. There is clear evidence that adults with learning disabilities have low levels of activity in comparison to the general population. Those with higher levels of disability and those living in more restrictive environments are at an increased risk of sedentary lifestyles. In relation to good bowel health, even just moving around is good exercise and can help to get the abdominal muscles to work.
In order to encourage effective bowel movements, it’s important that a person is comfortable when using the toilet. Many factors affect someone’s ability to relax and to open their bowels.
Issues to consider in relation to the toileting environment are:
- bathroom is well-ventilated, warm and clean
- enough space
- adequate privacy
- lack of distractions
Research has demonstrated the most effective sitting position for defecation. Physiotherapists or occupational therapists may be able to assist with providing appropriate toilet seating to encourage the optimum posture. If someone is unbalanced on the toilet seat they will not be able to relax their perineum and defecate. Recommending a footstool to help someone position their feet for balance may be useful as this can help them to push with their stomach muscles.
Bowel habit retraining may be helpful for some people. The person should be supported to sit on the toilet first thing in the morning after a warm drink sometimes a lemony drink may help or about 30 minutes after eating a meal. This should be done every day at the same time. Try to link the toileting plan with the usual time that the person opens their bowels. This may be in the morning, after lunch or after the evening meal. This may require some planning and time management. They should be encouraged to sit on the toilet for 10 minutes and if they open their bowels in this time they should be rewarded.
It’s important that an individual can respond immediately to the sensation of needing to open their bowels. People with mobility problems should have help to get to the toilet when they need it.
Biofeedback is a behavioural therapy which can be used to treat people with bowel problems such as constipation if the usual treatment has not been effective. Methods of biofeedback therapy can vary considerably, but the aim is for the patient to gain improved control over their bowel movements. There’s some evidence that toileting programmes and behavioural approaches, including biofeedback, can improve symptoms of constipation but these studies weren’t specifically focused on people with learning disabilities.
5.3 Physical health and medication review
It’s important to check for health conditions that can cause constipation. Depression and thyroid deficiency are examples. These are usually very treatable but can come on slowly and continue unnoticed. People with learning disabilities are more likely to be taking medication associated with the side effect of constipation. People should be on the least amount of medication required to manage their condition but this isn’t the case for many people with learning disabilities. Therefore, an essential aspect of constipation management should be a medication review. Any constipating medication should be adjusted if possible.
5.4 Abdominal massage
Abdominal massage can be as effective as laxatives in the treatment of constipation. The advantage of the abdominal massage is there are no known side-effects. Additionally, it can help individuals regain normal bowel function. One case report of a trial of abdominal massage for a young man with cerebral palsy noted his increase in self-esteem when he became in charge of opening his own bowels. Following the trial, a 3 stage training package was developed to train healthcare workers in the use of abdominal massage. Eighteen months after the training, the project was audited and staff knowledge of bowel care as well as confidence in delivering the abdominal massage was good. The staff members’ initial concerns about the withdrawal of laxatives for the people they supported had proved unfounded.
Family carers and paid supporters have a key role in early recognition of constipation and prompt treatment. It is therefore essential that they have appropriate training and education around the issues. A case study of management of constipation in a young woman with learning disabilities identified the 2 hour workshop they ran with the woman, her peers and her care staff as a crucial factor in successful treatment.
Those supporting people with learning disabilities must be able to recognise signs and symptoms of constipation. Learning disability nurses are one of the professional groups that have a role to play in the management of constipation. They should be able to raise awareness of constipation, educate and advise on its management. Research has shown that learning disability nurses have, in general, relatively good knowledge of constipation, but their knowledge around some of the risk factors, such as diabetes and medications, could improve.
5.6 Easy-read information
Relevant information with pictures and simple language may be helpful for people with learning disabilities. Such resources might address the causes of constipation as well as advice on how to manage it. There’s currently a lack of easy-read resources about constipation and its management.
An essential aspect of a holistic management strategy is ongoing evaluation in order to gauge if the interventions are being successful. Ideally, a baseline measurement should be taken, and an objective measure such as a stool chart should be used on a daily basis to monitor the effectiveness of the bowel programme. It’s Important to identify what’s working and what isn’t working. For example, in some cases increasing fibre intake can result in bloating but no improvement in bowel movements. An effective management strategy will result in softer stools being passed more frequently and with less effort. There may be a need to take waist measurements to monitor bloating where there are real concerns.
Monitoring the problem is only useful if appropriate action is taken in response. There should be clear guidance on what action to take for an individual if concerns are identified.
Laxatives may be prescribed if lifestyle changes aren’t sufficient to manage the constipation or while waiting for them to have an effect. Long-term use of laxatives isn’t generally recommended. Some laxatives can be habit forming, which means the bowel may start to depend on them. This then compounds the problem. There’s also some evidence of long-term use of stimulant laxatives having carcinogenic effects.
Currently, guidance for laxative use in people with learning disabilities is the same as for the general population.
Laxatives don’t always provide sustained relief of symptoms. For many people with learning disabilities this will then lead to an additional type of laxative being prescribed. Ideally, the preferred treatment would be the lowest possible effective dose of one medication.
There’s some evidence that for people with learning disabilities there can be an over reliance on laxatives. If long-term use of laxatives is needed there should always be consideration of other non-pharmacological approaches. Sessions using muscular training, abdominal massage and diaphragmatic breathing combined with laxatives have been shown to be more effective for chronic constipation than the use of laxatives alone.
6. Other resources
6.1 Guidance about the management of constipation
NICE have published a clinical knowledge summary about constipation aimed at primary care practitioners. There’s a summary of the current evidence about constipation in relation to diagnosis, assessment, investigations and management.
Further NICE guidance provides strategies based on the best available evidence to support early identification, positive diagnosis and timely, effective management of constipation in children and young people.
6.2 Resources for professionals/family members and carers:
Bowel Management: Constipation - Clinical Link Pathway (CLiP) is a pathway designed to be used at any time with any adult where constipation is a concern. The appendices include embedded documents to be used as part of the pathway.
NHS Choices has a series of web pages with information about constipation. The topics covered include symptoms, causes, diagnosis, treatment, complications and prevention.
Bristol Stool Chart is a medical aid designed to classify faeces into seven groups. It is helpful for keeping stool charts. There is a version for children.
A Parent’s Guide to Constipation in Children with Developmental Disabilities has information on how constipation can be managed in relation to diet, behaviour and medication. Recipe suggestions are included.
ERIC, a children’s bowel and bladder charity have web pages designed for parents to give advice about coping with constipation and soiling . There are factsheets, tips and links to resources.
6.3 Easy read resources
Preventing Constipation gives information about things to eat and drink to help prevent constipation. There is also some advice on how to stay active.
6.4 Smartphone apps related to constipation management
Bristol Stool Chart app allows quick and easy rating of stool quality (using the Bristol Stool Scale). It is available on Apple and Android. This information is recorded and can be shared with a health professional. It also presents information about each type of stool along with links to more information online.
Tummy Trends is a personal guide designed to track symptoms associated with constipation and irritable bowel syndrome, available on Apple. It is designed to allow someone to easily enter symptoms, keep track of meals, and select factors that may affect them. The entries can be reviewed at any time or viewed in a graph.
Stool Checker is for people to keep a record of their bowel movements. It is designed to be very easy to use.
Poop Diary allows easy recording of every bowel movement, including time, colour, amount, and shape information. In addition, it can send a reminder if there has been no bowel movement for a period of time.
Poop Log to track bowel movements using the Bristol Stool Scale. It is possible to record the type of bowel movement, volume, and time and to attach a note/photo. There is an optional function to log a pain/discomfort level from 0 to 10.