This guidance is for public health staff commissioning or running weight management services and other mainstream health professionals working to support people to lose weight. It advises about specific aspects of weight management for people with learning disabilities. It includes useful things to consider when treating a person with learning disabilities and insights into their experiences of healthcare.
Obesity and people with learning disabilities
Being obese puts people at much greater risk of many important health problems including:
- heart disease
- high blood pressure
- strokes
- diabetes
- several types of cancer
- mobility difficulties
Achieving healthier diets and healthier weight is one of the top 10 priorities for protecting and improving public health, as set out in the Public Health England (PHE) 2020 to 2025 strategy.
The 2 main ways to reduce weight are diet and exercise. For most people, bringing their weight down to healthy levels involves both exercising more and eating healthier amounts of healthier foods. Many people find that participation in some type of weight management programme helps them do this.
A higher proportion of people with learning disabilities is obese. For most of them, the diet and exercise requirements of losing weight are similar to the actions required of others. However, the task of helping them achieve this involves additional complexities.
Some people with learning disabilities have particular problems with weight control as a result of conditions such as Prader-Willi Syndrome or because of specific medications they take. However, whatever underlying causes people have for their weight problems, diet and exercise are almost always important elements in achieving and maintaining a healthy weight and the principles discussed here are relevant.
The prevalence of obesity in people with learning disabilities
It’s been recognised for many years that people with learning disabilities are at increased risk of being overweight or obese compared to the general population, with poorly balanced diets and very low levels of physical activity. This risk, in turn, increases the likelihood of a range of health and social problems.
As noted in the PHE 2020 to 2025 strategy, poor diets and excess body weight deprive people in England of more than 2.4 million life years through premature mortality, illness and disability each year. There are close links to broader social disadvantage, such as poverty, poor housing and social isolation, which is experienced disproportionately by people with learning disabilities.
The most recent data on the prevalence of excess weight in people aged 18 and older with learning disabilities is based on analysis of data from GPs across the whole of England. This showed that, in comparison to the general population, a smaller proportion of people with learning disabilities are in the milder category termed ‘overweight’ (27% of people with learning disabilities compared to 31.8% of people without a learning disability). However, there are higher proportions in the more severe category of obese (37% of people with learning disabilities compared to 30.1% of people without learning disabilities).
Assessment of healthy weight
One way of assessing whether a person is underweight, overweight or obese is the measure of BMI, which relates weight to height. For adults, a BMI in the range 25 to 29.9 represents being overweight and 30+ is obese (for children BMI needs to be compared to a reference population of children of the same age and gender and there are special reference charts for children and young people with Down syndrome).
The British Dietetic Association (BDA) cautions that chronic constipation is a frequent problem for people with learning disabilities and this can distort assessing their weight. In addition, BMI is not always an appropriate measure for people with atypical body shape and there can be challenges in measuring height and weight accurately for some individuals.
Some reasonable adjustments to consider include:
- seated or hoist scales, or scales that will accept a wheelchair
- measuring height with a tape measure
- measuring height with a rollameter
- measuring height with the person lying down
Setting a weight loss target may be an acceptable alternative to measuring a change in BMI for adults although not for children, unless clinically advised to do so. Other common ways of measuring fatness include measuring a fold of skin and measuring the waist.
Adult waist sizes are linked to risk of health problems, for example:
- men with a waist size of 94cm to 101cm and women with a waist size of 80cm to 87cm have an increased risk of health problems
- men with a waist size of 102cm and over and women with a waist size of 88cm and over have significantly increased risk of health problems
Impact of excess weight
For the general population being overweight is associated with increases in the risk of:
- cardiovascular disease
- diabetes
- some cancers
- stigma and bullying in childhood
- poor mental health in adulthood
PHE estimates that 70,000 premature deaths in the UK could be avoided each year if UK diets matched nutritional guidelines.
Data on people with learning disabilities from the analysis of primary care data described above shows that people with learning disabilities have substantially higher rates of conditions associated with being overweight, such as diabetes, heart failure and strokes. Mental ill health, bullying and abuse are all more commonly experienced by people with learning disabilities than in the general population, but no estimates are available to show what contribution excess weight may make to these problems of health and wellbeing.
Prevention and management of excess weight in people with learning disabilities
Below is a brief review of some of the evidence around the issues to consider when working to support people with learning disabilities to manage their weight. There are implications for people with learning disabilities, supporters such as family carers and paid staff and health professionals – both mainstream and learning disabilities specialists.
Raising awareness of excess weight with people with learning disabilities and their family carers
Research has suggested that young people with learning disabilities were likely to hold more positive beliefs about their bodies than young people without learning difficulties, irrespective of their size. Women with learning disabilities tend to perceive their bodies as being smaller than they were. This finding has implications for the approaches needed when supporting people with learning disabilities to lose weight.
It’s been shown that the main barrier to participation in physical activity for people with learning disabilities was the lack of understanding of its benefits. There is mixed evidence about people with learning disabilities and their knowledge about healthy living. People with learning disabilities may benefit from health promotion work to help them to understand the health risks of being overweight. This knowledge might be necessary if they are going to maintain healthy lifestyle changes.
Annual health checks
Annual health checks are an opportunity for a full review of a person’s health, lifestyle, medication and interrelated risks to health and wellbeing. It’s now a requirement that a health action plan is produced following an annual health check. Health action plans provide a structure for agreeing to actions based on the results of the health check. In relation to weight management, there might be actions for clinicians, the individual and their supporters.
Possible examples for clinicians are:
- review and possibly change medication that affects weight
- alter nutrition where this is assisted by gastrostomy
- management of diabetes
Possible examples for individuals are:
- eating more healthily
- taking more exercise
Examples for family carers or paid social care staff are:
- helping to motivate the individual to eat more healthily and take more exercise
- helping the individual to plan and cook more healthy meals
- supporting the individual to be more active
- having a role in implementing any best interests decisions about diet and physical activity
The role of families and social care staff
Weight loss interventions are more effective if supporters such as family carers or paid staff are included. They can help to provide both motivational and practical support. When paid staff and family carers are involved, it’s important that there’s a consistent approach from everyone.
Research has identified inadequate support as a major barrier to healthy living.
Problems include:
- supporters’ lack of knowledge about buying and cooking healthy food as there is a need for training and good information for families and paid staff
- lack of time which often leads to the frequent use of ready meals because shopping for, and preparing, healthy meals can be time-consuming
- the use of food and drinks as a reward or means of control
- over-reliance on unhealthy activities, for example driving to a café or a pub
- supporters making unhealthy choices themselves so staff need to be encouraged to become healthy role models
- limited staffing can make it difficult to attend exercise classes or take part in health activities
- lack of understanding of the principles of choice and control
PHE collaborated with the Voluntary Organisations Disability Group to develop a health charter for social care providers setting out the roles of support providers in promoting health and supporting access to healthcare. This is accompanied by guidance for commissioners and providers.
Ensuring mainstream programmes are accessible
People with learning disabilities may not always be able to access all the weight loss programmes that are available to the general population. The programmes need to be adapted to be accessible to people with learning disabilities.
The evidence shows that:
- promotional health resources are likely to require literacy skills and often use abstract images so accessible information and resources are needed
- people with learning disabilities benefit from a multi-disciplinary and multi-component approach that takes an individualised approach
- people need support to understand the risks to their health to aid sustained motivation so training and appropriate information can help people to feel more positive about physical activity
- the involvement of peer partners without disabilities, who provide reciprocal support, has been shown to encourage participation in exercise in community settings
Environmental, social and personal factors
There is a range of practical barriers to healthy living for people with learning disabilities that need to be overcome. These can have an impact on people’s ability to eat healthily or to engage in regular physical activity.
They include:
- transport issues
- financial constraints
- immobility and illness
- risk assessment issues
There may also need to be a wider consideration in terms of individualised planning. Decisions about where the person will live should consider practicalities such as access to food shops, sports and leisure facilities, and opportunities to reduce reliance on cars. It’s important to think about the person’s options within their daily routines and what’s acceptable or possible both to them and to others around them such as other members of the household.
Capacity and choice around diet and physical activity
People with learning disabilities or their families and care services often mention issues about capacity and choice around diet and physical activity as being difficult, this can include:
- supporters such as family or staff struggling to contribute to best interest decisions
- dilemmas about balancing choice and the duty of care and balancing different risks and benefits
- paid supporters can feel limited in their capacity to influence food choices
- supporters misusing the right to make unwise decisions as an excuse for not helping the person to understand risks and options properly
Risk assessment issues have been identified as one of the main barriers to physical exercise. The Health Equalities Framework offers a tool that can be used by support workers and health practitioners, as well as people with learning disabilities and their family carers, to discuss risks to health and wellbeing. It encourages discussion about balancing risks: for example, the risks posed by being overweight alongside the risks of limiting choice.
Further resources
Guidance about the management of excess weight
The Eatwell guide is a policy tool used to define government recommendations on eating healthily and achieving a balanced diet; using the 5 food groups, the guide shows how different foods contribute towards a healthy balanced diet.
The NICE obesity pathway signposts guidance, resources and standards.
Commissioning excellent nutrition and hydration provides guidance and examples to support commissioners to improve the nutritional and hydration needs of their populations.
For practitioners, family carers and support staff
NHS Change4Life provides practical advice, tips, activities and resources for families and the general public. Although it is not specific to people with learning disabilities, it includes colourful and engaging images and is written in plain English so it is a useful site for health professionals to refer to people with learning disabilities and their family carers.
Managing weight with a learning disability includes advice from a dietitian about how to think about the lifestyle of the person with learning difficulties and how to promote a healthy, balanced diet and to include more physical activity if needed. Links to tools and videos are included.
12 month challenge workbook is designed to help people with learning disabilities to learn and understand more about healthy eating, exercise and to encourage behaviour change with a different topic each month, encouraging people to make small changes and to record progress.
Weightwise is a 10-week healthy eating programme for people with learning disabilities with top tips and examples of some of the resources developed for people on the programme.
Losing weight for people who use wheelchairs gives advice on diet and physical activity.
Weighing people in wheelchairs provides 2 information sheets about wheelchair scales.
Accessible resources
Live with a healthy heart is a booklet and DVD to help people with learning disabilities think and talk about healthy lifestyle. It features people with learning disabilities talking about what they have done and the leaflet includes guidance notes for supporters.
Easyhealth has a range of accessible resources on healthy eating, physical activity and obesity.
A Picture of Health has a range of easy-read leaflets on healthy eating and physical activity.
The Healthy Eating Guide is an easy-read resource covering food groups, portion sizes, checking weight and tips for losing weight.
Apps related to obesity and weight management
The NHS Apps Library has health and fitness trackers to support weight management that are designed for general use, not adapted for people with learning disabilities.
Change4Life has a range of apps to support healthy eating, designed for general use, not adapted for people with learning disabilities.
