A learning disability affects the way a person learns new things in any area of life, not just at school. Find out how a learning disability can affect someone, and where you can find support.
A learning disability affects the way a person understands information and how they communicate. Around 1.5m people in the UK have one. This means they can have difficulty:
- understanding new or complex information
- learning new skills
- coping independently
It is thought that up to 350,000 people have severe learning disabilities. This figure is increasing.
Mild, moderate or severe learning disability
A learning disability can be mild, moderate or severe. Some people with a mild learning disability can talk easily and look after themselves, but take a bit longer than usual to learn new skills. Others may not be able to communicate at all and have more than one disability (see Profound and multiple learning disability, below).
A learning disability is not the same as a learning difficulty or mental illness. Consultant paediatrician Dr Martin Ward Platt says: "It can be very confusing," he says, pointing out that the term "learning difficulties" is used by some people to cover the whole range of learning disabilities.
"It is easy to give the impression, by using a term like 'learning difficulties', that a child has less of a disability than they really do," says Dr Ward Platt.
Some children with learning disabilities grow up to be quite independent, while others need help with everyday tasks, such as washing or getting dressed, for their whole lives. It depends on their abilities.
Children and young people with a learning disability may also have special educational needs.
Sources of support for learning disabilities
Some learning disabilities are diagnosed at birth, such as Down's syndrome. Others might not be discovered until the child is old enough to talk or walk.
Once your child is diagnosed with a learning disability, your GP can refer you for any specialist support you may need. You'll begin to get to know the team of professionals who will be involved in your child's care.
Support from professionals – including GPs, paediatricians, speech and language therapists, physiotherapists and educational and clinical psychologists – is available to help individuals live as full and independent a life as possible.
What causes learning disabilities?
A learning disability happens when a person's brain development is affected, either before they are born, during their birth or in early childhood.
Several factors can affect brain development, including:
- the mother becoming ill in pregnancy
- problems during the birth that stop enough oxygen getting to the brain
- the unborn baby developing certain genes
- the parents passing certain genes to the unborn baby that make having a learning disability more likely (known as inherited learning disability)
- illness, such as meningitis, or injury in early childhood
Sometimes there is no known cause for a learning disability.
Some conditions are associated with having a learning disability, such as cerebral palsy. This is because people with these conditions are more likely to have one.
Everyone with Down's syndrome, for example, has some kind of learning disability, and so do many people with cerebral palsy. People with autism may also have learning disabilities, and around 30% of people with epilepsy have a learning disability.
Profound and multiple learning disability (PMLD)
A diagnosis of a profound and multiple learning disability (PMLD) is used when a child has more than one disability, with the most significant being a learning disability.
Many children diagnosed with PMLD will also have a sensory or physical disability, complex health needs, or mental health difficulties. People with PMLD need a carer or carers to help them with most areas of everyday life, such as eating, washing and going to the toilet.
If you are looking after a child or adult with PMLD, you can find help and support in Care and support.
Having a learning disability diagnosed can be difficult, and in some cases it isn't clear what the learning disability is or why it happened.
However, your child's abilities and needs can be assessed to make sure they get the support they need.
Learning disability diagnosis
Some learning disabilities are discovered at birth, while others are not diagnosed until much later. If your child is diagnosed at or around birth – for example, with Down's syndrome – their doctors probably won't be able to tell you exactly how it will affect their development. The extent of your child's disability will become clearer as they reach the ages when they should be talking, walking or reading.
For children who are not diagnosed at birth, finding out they have a learning disability can take time. "The main problem is that learning disabilities are quite hard to diagnose very early in life," says Dr Martin Ward Platt, consultant paediatrician at Royal Victoria Infirmary, Newcastle-upon-Tyne.
"There may be very little in the way of developmental signs. If a child hasn't started talking by the age of two, that can be linked to learning problems later on, but this is not certain."
Most learning disabilities are obvious by the age of five. "Intellectual function [also known as cognitive ability] can only be assessed by testing children from the age of five, so most children with these disabilities are only diagnosed when they start school," says Dr Ward Platt.
Even after a diagnosis is made, it can be hard to tell how it will affect your child in the future. However, your child's current needs can be assessed to work out what kind of support will help them, and they will be referred to a paediatrician (a specialist in child health). You can talk to parents of children with learning disabilities in your area to ask whether they can recommend a good one.
Getting a learning disability diagnosis
Under the Children and Families Act 2014, social services has a duty to assess children in need, including children with disabilities. The aim is to identify the child's specific education and healthcare needs and draw up a plan of action for meeting these needs.
For more information on all aspects of being a carer, including practical support, financial matters and looking after your own wellbeing, see Care and support.
If you believe your child has an undiagnosed condition, your GP should be able to help you to get the advice you need. The charity Scope's expert forum includes advice for families who can't get a diagnosis.
Your child may also benefit from an assessment of your care and support needs. The assessment establishes the needs of a child with a disability and which services would be best for them. The purpose of the assessment is to draw up a plan of action for your child.
If you've had concerns about your child, you might feel relieved to have a diagnosis. Don't be afraid to ask any questions. Find out as much as you can about your child's needs.
Most parents assume their children will be healthy and develop normally, so hearing that your child has a learning disability can come as a shock. It takes time to accept the diagnosis and to mourn the child you might feel you have lost.
Talking to your child's doctors, nurses, support groups or friends and family can help, although friends and family might need their own time to accept what has happened. Many parents find it helpful to contact other families who have been through the same thing, as talking to other parents can be a useful source of support.
Counselling can also help, so ask your health visitor or GP for recommendations.
The term "developmental delay" is sometimes used to describe a child's condition if they are not progressing as expected. "By itself, 'developmental delay' is not a diagnosis," says Dr Ward Platt. The main issues when assessing a child for learning disability are:
- By how much is the child delayed, and in which areas?
- Are there areas in which the child is not delayed?
- What explanation for any delay might lie in the child's background (such as a long stay in hospital for an unrelated condition)?
- What underlying medical condition might explain the delay?
- Is the delay likely to be the product of a low level of care and inadequate stimulation in the home?
Delay is not always significant. "Some children are slow to walk, so may appear to be delayed. But if one of the parents was very slow to walk, then it's likely the delay just runs in the family," says Dr Ward Platt.
Check out our selection of apps to help people with learning disabilities in our Digital Apps Library.
Henry, 10, has ASD
Deborah's son Henry is 10 years old and has autism spectrum disorder (ASD). Henry's main difficulties are social ones. From a young age, he was unable to recognise facial expressions, body language, tone of voice, and social rules of play, which made it particularly hard for him to fit in at school.
Henry is at a mainstream school and has a full-time helper with him. Deborah feels strongly that Henry benefits by being exposed to the challenges that come with building relationships with friends every day.
"It's tough but rewarding, because he is forced to address and grasp crucial life skills about interacting with others and what constitutes a friendship," she says.
Henry also finds it hard to recognise that his own behaviour can lead to problems. To help him, Deborah draws pictures showing the different situations he finds himself in.
In this way, she is able to help Henry re-examine what happened. He can then assess the positions of everyone involved at his own pace, taking the time to read and understand facial expressions and body language.
As a result, his mother says, "his social life is flourishing". This technique is similar to those outlined by the National Autistic Society, such as comic strip conversations.
Deborah also found watching the film Temple Grandin – the true story of an autistic scientist – with Henry was helpful, as they were able to watch different scenes and discuss the way people responded to Temple's behaviour. Henry, who over time has become more aware of his condition, drew comfort from realising he was "not the only one".
"What has been important to us as Henry's parents throughout is to make sure that Henry does not consider the ASD as a weakness, but merely part of his wonderful make-up," says Deborah.
Amariah, 9, has Down's syndrome
Deborah's eldest daughter, Amariah, is nine years old and has Down's syndrome. She studies at a special education school for children with mild to moderate special needs. Although Amariah is learning to read, she only speaks a few words. "Our current goal is to develop this part of her life," says Deborah.
To encourage Amariah to speak more, Deborah is teaching her how to create sentences using her fingers and through repetition. "For example, every morning when I wake her up for school, I say 'Good morning, Amariah," explains Deborah.
"While doing so, I put my hand near her face within her direct line of sight and I raise a different finger starting from my thumb as I say each word. I then repeat the process, saying the first word 'good' and then wait for her to repeat the sentence, prompting her with the next word by raising my index finger."
After only a few days, Amariah was able to say "Good morning, Mummy" when she woke up. "The most rewarding part for me is her smile as she speaks to me," says Deborah.
To help Amariah carry out daily tasks, such as washing, showering and dressing independently, Deborah creates images to illustrate what Amariah needs to do.
"I took photographs highlighting the step-by-step process that we all follow to get dressed. I laminated them and arranged them in order on a large board, referring to each picture as she got dressed," explains Deborah. Amariah is now able to dress and shower with minimal support. She is also learning how to eat independently.
Deborah's techniques for helping Amariah are similar to those used in Makaton, a language programme using signs and symbols that helps people with special needs learn to communicate. As they grow in confidence, most people naturally drop Makaton in favour of speech.
Other family members
Deborah also has twin daughters, now aged four. At the age of 2.5, one of the twins asked why Amariah, then aged seven, didn't talk. Deborah and her husband chose to explain Amariah's condition to both girls very simply, encouraging questions.
"Although the twins sometimes get frustrated at some of Amariah's behaviour, they are extremely patient and kind towards her," says Deborah. "Recently, I had the pleasure of hearing both girls take Amariah to the mirror to teach her how to clean her face when she had finished eating."
Henry also likes to act as Amariah's advocate, explaining to others why it is difficult for her to speak and play appropriately, hoping both adults and other children will be more patient. Deborah says she finds this "adorable to watch".
In turn, Amariah is especially sensitive towards Henry, cuddling him when she sees he is upset. "For two children who have both had communication difficulties, they have a very strong connection," says Deborah.
Emotional and practical support
While her children were small, Deborah's family benefited from the support of Pre-school Teaching Team, an early intervention service for children with complex special educational needs and disabilities, available through the local council. "Their guidance, support and regular play therapy sessions in our home were very educational and insightful for me," says Deborah.
When Amariah was born, Deborah joined a local support group for parents of children with special needs. "It was a safe place that I was able to turn to, where I felt comfortable to cry or share painful experiences. I have always been of the opinion that a calm mum makes for calm children," she says.
In dealing with the challenges of her children's conditions, Deborah found the most helpful responses came from those family and friends who listened "and gave me a hug when I needed it most".
She also feels it is important that all families take the time to teach their children why some people appear or behave differently. "When children are taught about these differences, they have patience and understanding," she says.
As a parent of two children with special needs, Deborah has spent a lot of time with doctors and specialists. "I never met one medical professional or therapist on the NHS who was unkind or unsupportive, although it was clear that their resources were restricted," she says.
Parenting children with special needs
"I am in awe of my children's inquisitive and happy dispositions, and ultimately their ability to melt the hearts of anyone they come into contact with," says Deborah, with obvious pride.
She adds her children have taught her the art of patience – for such a busy person who finds it hard to relax, this is an important lesson to learn. "Life for all of us is so hectic and rushed. When I teach my children, nothing can be rushed. If it is, then they are unable to grasp what I'm teaching them and become unhappy and frustrated."
Finding out your child has a learning disability can lead to many fears and questions for any parent. While Deborah struggled when her children were first diagnosed within a year of each other, she says it does get easier.
"If you are in the midst of such pain, go easy on yourself and remember to take everything step by step. Trust your instinct in all decisions and you will make it through."
Contact a Family brings together the families of children with special needs and gives information and advice. You can phone the free helpline on 0808 808 3555.
Deborah French has written a book about her family's experiences, called A Brief Moment in Time.
Eating a meal can be particularly challenging for children who have disabilities. A lack of fine motor skills (like finding it hard to hold a fork), sensory restrictions (like being paralysed or unable to see) and co-ordination difficulties are some of the many reasons that may delay the learning process. This can be frustrating for you and your child.
Author Deborah French has four children, two of whom have special needs. Her eldest daughter, Amariah, has Down's syndrome and her son, Henry, has autism spectrum disorder. "Socialising with others generally includes eating together," she says. "So learning how to eat neatly is crucial to helping our children to integrate."
Deborah, who also runs cookery classes for children with special needs, came to realise that nagging her children about their table manners wasn't working. Instead, she developed practical solutions to help them learn, with rapid results.
Deborah's top tips for happy mealtimes
1. Be patient
"When stress or frustration controls your reactions while trying to teach your child, they will reflect your mood and act accordingly. They will fear your reaction to their mistakes, and as a result will not be able to give their best efforts. Give instructions calmly, with positive reinforcement."
2. Invest in a funky child-sized apron
"As your child gets older, even though it may still be necessary for them to wear a bib to protect their clothing, this can also be demoralising and embarrassing in front of other family members or peers. An apron is more discreet and will help eliminate any negative feelings your child may harbour before mealtime has even begun."
3. Encourage your child to help lay the table
"Irrespective of the nature of your child's disability, take the time to involve them in preparing the table for dinner. Even watching you collect cutlery, cups and napkins helps your child to feel they have participated. During this process, talk your child through what you are doing and why. For example: 'We use a fork to pick up pieces of food on our plate instead of our fingers. That way, the fork gets dirty and not our fingers'."
4. Use heavy cutlery and solid crockery
"As parents, we instinctively opt for plastic or disposable utensils to avoid breakage and to make cleaning up easier. But for a child who has either low or high muscle tone or difficulty with their fine motor skills, a plastic fork simply feels like air. These children need to be able to feel the cutlery they are holding. The same is true for plastic plates and cups, which are unstable and easily knocked over. Solid cutlery and crockery will make it easier to teach your child how to eat."
Read about other eating equipment that can help.
5. Take the time to eat with your child
"If you eat your evening meal later than your child, compromise by ensuring that during your child's mealtime, you too are seated at the table. Even if you enjoy your coffee or a smaller version of what your child is eating, they will be encouraged by your presence. You can then talk about your food and how you eat with your cutlery. Take note of how quickly your child imitates your actions."
6. Keep a standalone mirror and wet cloth handy
"The most effective way of teaching self-awareness to a child is to let them view themselves. Even as adults, how often after enjoying a meal with friends have we been unaware that a chunk of food, usually green in colour, has become wedged between our front teeth?
"Apply this theory when helping your child to understand food residue on their face after eating. Before they leave the table, place the mirror in front of them and encourage them to look at their reflection and clean themselves using the wet cloth."
7. Encourage your child to clear their place
"Again, irrespective of your child's disability, teach them how to participate in the cleaning up process after eating according to their ability. This may involve them handing their plate to you or taking it to the side to be washed; alternatively wiping their place clean as best they can. Any level of participation helps to develop their self-awareness and obligations at mealtimes.
"It's important to remember that everyone likes to feel valued and needed. When you give your child responsibilities, they feel important to you and the family. This in turn boosts their self-confidence and speeds up the learning process."
Read our interview with Deborah about parenting children with special needs.
Specialist eating and drinking equipment
To help your child learn good eating skills, you may find that specialist eating or drinking equipment will make a real difference. The Caroline Walker Trust, a food charity, recommends a number of helpful aids to eating that parents of children with learning disabilities may find useful for their child.
- Different shaped cups, with one or two handles, of different weights, materials, transparencies and designs. The cups should be designed not to shatter or break if they are bitten.
- A transparent cup can be helpful when helping someone to drink, because you can see how much liquid they're taking.
- Cutlery of differing shapes, sizes, depths and materials. Again, the cutlery shouldn't shatter if it is bitten. Solid plastic cutlery or plastic-coated metal might be better for people who have a bite reflex when cutlery is placed in their mouth. Shorter-handled cutlery is easier to manage, and hand grips or irregularly shaped handles may help someone in using a utensil.
- Plates and bowls that do not slip, have higher sides to prevent spillage, or are angled to make access to food easier.
- Insulated crockery that keeps food hot if mealtimes are lengthy.
- Non-slip mats that support crockery.
- Straws, which can help those with a weaker suck and can have different widths.
- Feeding systems that deliver food to the diner's mouth through, for example, a rotating plate and a mechanical or electronically controlled spoon. Some systems are powered, others are hand- or foot-operated.
For more information and details of suppliers, visit the Living Made Easy website.
If your child has a learning disability, their special educational needs (SEN) can be met either in a mainstream school with extra support, or in a special school.
If your child has special educational needs, they will be able to access help, called SEN support, from:
- nurseries or childminders
- further education institutions, such as colleges and 16-19 academies
Children and young people with more complex needs might instead need an education, health and care (EHC) plan.
You can find out how to get local support through your local authority website and search for "local offer".
Getting SEN support
You may be contacted if your nursery/childminders, school or college think your child needs SEN support.
In schools, for example, this will be by your child's teacher or special educational needs co-ordinator (SENCO).
You can also approach your child's school/nursery etc if you think your child might have SEN.
Communicate with your child's teachers
Getting involved with your child's school will help them get the support they need. Let the school know what's going on at home.
Explain your priorities for your child and how he or she is doing at home, so that the school can build on this.
Your views and involvement will be needed throughout the process, and you will be kept up to date with the progress made.
Young people aged 16 to 25 will be fully involved in designing their own SEN support and provision.
A four-stage process
Getting SEN support happens in four stages. These are:
Assessing your child's needs
Talk to your child's teacher or the special educational needs co-ordinator (SENCO) about getting an assessment.
The SENCO can spend some time with your child to work out what kind of extra support they might need. If necessary, other specialists, like a psychologist, may be involved.
Every child's SEN needs are different, depending on what kind of difficulties they have and how serious these are.
Planning their SEN support
You and your child's school or nursery need to agree how your child will benefit from any SEN support they get.
All those involved, including you, will need to have a say in what kind of support will be provided, and decide a date by which they will review the plan.
Do – putting the plan into action
Your child's school or nursery will put the planned support into place. The teacher remains responsible for working with your child on a daily basis.
However, the SENCO and any support staff or specialist teaching staff involved in providing support should work closely to track your child's progress and check that the support is working.
Review the outcomes of the SEN plan
The support your child receives should be reviewed at the time agreed in the plan.
If your child doesn't progress with their current support, the review is an opportunity to discuss alternatives.
Education, health and care (EHC) plan
An EHC plan is for children and young people aged up to 25 who need more support than is available through special educational needs support.
EHC plans identify educational, health and social needs, and set out the additional support to meet those needs.
Requesting an EHC assessment
You can ask your local authority to carry out an assessment if you think your child needs an EHC plan.
A young person can request an assessment themselves if they're aged 16 to 25.
A request can also be made by anyone else who thinks an assessment may be necessary, including doctors, health visitors, teachers, parents and family friends.
If they decide to carry out an assessment you may be asked for:
- any reports from your child's school, nursery or childminder
- doctors' assessments of your child
- a letter from you about your child's needs
The local authority will tell you within 16 weeks whether an EHC plan is going to be made for your child.
Check out these infographics from the SNJ on:
- requesting an Education, Health and Care (EHC) Needs Assessment
- conducting an Education, Health and Care (EHC) Needs Assessment
Personal EHC budgets
You may be able to get a personal budget for your child if they have an EHC plan or have been told that they need one.
It allows you to have a say in how to spend the money on support for your child.
There are three ways you can use your personal budget. You can have:
- direct payments made into your account – you buy and manage services yourself
- an arrangement with your local authority or school where they hold the money for you but you still decide how to spend it (sometimes called "notional arrangements")
- third-party arrangements – you choose someone else to manage the money for you
You can have a combination of all three options.
If your child got support before 2014
The current SEN arrangements, called SEN support, came into force in September 2014.
SEN support replaces:
- School Action or School Action Plus
- Early Years Action or Early Years Action Plus
EHC plans replace statements of SEN and Learning Disability Assessments (LDAs).
Dates for moving to an education, health and care (EHC) plan:
- September 2016 if they have a learning difficulty assessment (LDA)
- spring 2018 if they have a statement
This normally happens at a planned review, or when your child moves school. Your council will tell you which.
For more information about these reforms read 11 things you need to know about Special Educational Needs and Disability reforms from SNJ.
Disagreeing with a decision
You can challenge your local authority about:
- their decision to not carry out an EHC assessment
- their decision to not create an EHC plan
- the special educational support in the EHC plan
- the school named in the EHC plan
If you can't resolve the problem with your local authority, you can appeal to the Special Educational Needs and Disability (SEND) Tribunal.
An SNJ infographic explains how the appeal process works.
Help for parents and carers
Contact a Family can put you in touch with other parents who have children with learning disabilities. Parents can be a valuable source of information, from recommending children's centres and counselling services, to helpful individuals at the local authority
Independent Parental Special Education Advice (IPSEA) offers free and independent legally based information, advice and support to help get the right education for children and young people with all kinds of special educational needs and disabilities.
The Annual Health Check scheme is for adults and young people aged 14 or above with learning disabilities who need more health support and who may otherwise have health conditions that go undetected.
Who will get an Annual Health Check?
People aged 14 and over who have been assessed as having moderate, severe or profound learning disabilities, or people with a mild learning disability who have other complex health needs, are entitled to a free annual health check.Read about how to get care and support needs assessed.
What are the benefits of an Annual Health Check?
People with learning disabilities often have difficulty in recognising illness, communicating their needs and using health services. Research shows that regular health checks for people with learning disabilities often uncover treatable health conditions. Most of these are simple to treat and make the person feel better, while sometimes serious illnesses such as cancer are found at an early stage when they can be treated.
The Annual Health Check is also a chance for the person to get used to going to their GP practice, which reduces their fear of going at other times.
How do you get an Annual Health Check?
Adults and young people aged 14 or above with learning disabilities who are known to their local authority social services, and who are registered with a GP who knows their medical history, should be invited by their GP practice to come for an Annual Health Check.
What happens at an Annual Health Check?
The Annual Health Check lets the person with learning disabilities go to their GP practice and have aspects of their health checked. It also allows them to talk about anything that is worrying them.
During the health check, the GP or practice nurse will carry out the following for the patient:
- a general physical examination, including checking their weight, heart rate, blood pressure and taking blood and urine samples
- assessing the patient’s behaviour, including asking questions about their lifestyle, and mental health
- a check for epilepsy
- a check on any prescribed medicines the patient is currently taking
- a check on whether any chronic illnesses, such as asthma or diabetes, are being well managed
- a review of any arrangements with other health professionals, such as physiotherapists or speech therapists
If the person's learning disability has a specific cause, the GP or practice nurse will often do extra tests for particular health risks. For people with Down's syndrome, for example, they may do a test to see whether their thyroid is working properly.
The Annual Health Check may also be a good opportunity to review any transitional arrangements that takes place when the patient turns 18.
The GP or practice nurse will also provide the patient with any relevant health information, such as advice on healthy eating, exercise, contraception or stop smoking support.
How will the Annual Health Check be tailored to the patient’s needs?
People with learning disabilities have lots of different needs. Sometimes these are written down in a health profile or health action plan that the GP or nurse can refer to. Putting “reasonable adjustments” in place can help people to have a successful health check. Reasonable adjustments mean changing services so they are easier to use.
These adjustments can include:
- using pictures, large print, and straightforward language to help explain what is happening
- booking longer appointments
- scheduling an appointment that starts at the beginning or end of the day, so people don’t have to wait
Is it compulsory to have an Annual Health Check?
No. All parts of the health check are voluntary. Anyone who is having the health check, or their carer, can ask the GP or practice nurse for more information about the process. The patient can then give their consent before any tests or procedures are carried out.
Is it the same as the NHS Health Check scheme?
No. The NHS Health Check programme is for all adults aged 40-74. It assesses their risk of heart disease, stroke, kidney disease, diabetes and dementia every five years. For more information, visit the NHS Health Check mini-site.
How many people have Annual Health Checks?
In 2013-14, 44.2% of eligible adults with a learning disability had a GP health check. This means that more than half of people who could have one are missing out.
The learning disabilities programme Improving Health and Lives, part of Public Health England, has more information on the Annual Health Check programme and its take-up.
Going into hospital is a worrying time for any of us. It can be even harder for someone who has a learning disability. If you're looking after an adult or child with a learning disability, follow these tips to make a hospital stay go smoothly.
Preparing a person with a learning disability for hospital
Before the hospital stay, make sure you've discussed what will be happening to the person with a learning disability. The hospital or GP may have given you printed information to go through, but simple explanations such as this Easyread description of what happens when you go into hospital (PDF, 846kb) can also help.
Both you and the person you care for can watch this video about preparing to go into hospital.
If a person with a learning disability going into hospital is as a direct result of their deteriorating mental health, or because of behaviour that is putting themselves or other people at risk, read this NHS guide for families and carers (PDF, 973kb).
Check if the hospital has a learning disability liaison nurse
If the person you care for is being referred to hospital by their GP, you can ask the GP to check whether the hospital has a learning disability liaison nurse.
This is a specialist nurse who supports people with a learning disability while they are in hospital, to make sure they get the care they need. It may be possible to choose to go to a hospital that has this service if another hospital does not have learning disability liaison nurses.
It's important that the nurse meets the person with a learning disability as soon as possible after they arrive at hospital. This is so the nurse can find out as much helpful information about the patient's learning disability and their preferences, and to understand the help they may need while in hospital. It may be possible to arrange a meeting before the hospital stay.
Let the hospital know about the learning disability in advance
Before going into hospital, make sure the hospital staff are aware of the type of disability the patient has. This should be something the GP includes in their referral letter – ask them about this to make sure.
The person you care for can ask the GP if they can see all the letters written about them, or you can ask for them. Find out about accessing medical records on someone else's behalf.
Fill out a 'hospital passport'
If the person with a learning disability has a communication book, make sure they have it with them. You could also arrange for them to have a "hospital passport", such as this example hospital passport. "Hospital passports" may be available from community learning disability teams, your GP or your hospital. They are designed to give hospital staff helpful information that isn't only about illness and health.
For example, it can include lists of what the person likes or dislikes, from the amount of physical contact to their favourite type of drink, as well as their interests. This will help all the hospital staff know how to make them feel comfortable.
Let staff know if there are any communication problems
If the person concerned is able to communicate with the hospital staff, you may want to encourage them to tell the nurses if they need help with eating or drinking, and whether they are in pain. Make sure staff involved in their care are aware of this – for example, through the hospital passport.
If you can see they're in pain but unable to communicate this, tell somebody straight away. Make sure all staff involved in their care are aware of communication difficulties at the outset.
Help the hospital staff to communicate and understand
If someone with a learning disability has difficulty understanding what the doctors or nurses are saying, make sure that you – or someone else they know and trust – are on hand to help explain any treatment or diagnosis.
Make sure their doctors and nurses are aware that this needs to happen and that it is written in their medical notes. It may be possible for you to stay in hospital overnight with the person you care for.
Consenting to treatment
While in hospital, the doctors will need to have a consent form signed before they can perform an operation on someone. If the person concerned is over 16 years old, they can usually give consent themselves. In some cases, they may be unable to understand what they are consenting to – in other words, they may "lack capacity". No person can legally give consent on behalf of another adult.
However, doctors may treat an adult patient without consent if the patient lacks capacity, providing that the treatment is necessary and in the patient's best interests. In this case, you may be consulted by the doctor or another healthcare professional, especially if you have the Lasting Power of Attorney to help make medical decisions on the person's behalf, or if you are their "deputy".
A deputy is appointed by the Court of Protection if the person concerned lacks the capacity to make a decision. Young people or adults with learning disabilities may never have had capacity and are therefore unable to agree to a Lasting Power of Attorney. A deputy can also take decisions on health and welfare, as well as on financial matters. They will come into action when the court needs to delegate an ongoing series of decisions, rather than one decision. However, deputies cannot refuse consent to life-sustaining treatment.
If the person concerned already has a Lasting Power of Attorney appointed, they won’t normally need a deputy as well. Read more about being a deputy on GOV.UK.
You may want to ask the following questions on behalf of the person you care for:
- What will the treatment involve?
- How will the treatment improve the patient's health?
- What are the benefits of this rather than other treatments (if there are any)?
- How good are the chances of success?
- Are there any alternatives?
- What are the risks, if any, and how serious could they be?
- What happens if the patient doesn't have treatment?
Fear of needles
Lots of people are afraid of needles, and they may cause added distress for someone with a learning difficulty. With blood tests, intravenous fluids and drug injections, needles can be hard to avoid in hospital.
If the person you care for gets upset by needles, ask if the hospital has EMLA cream, which can be used to numb the area where the needle will go in.
You can buy EMLA cream from a pharmacy. Find your local pharmacy.
Advice while in hospital
If you or the person you care for need help or advice while in hospital, you can contact your nearest Patient Advice and Liaison Service (PALS) or the Mencap Direct helpline: 0808 808 1111 (Monday to Friday, 9am to 5pm).
If you are unhappy with the standard of care in hospital and are unable to resolve it at the time, you may wish to make a complaint.
Make sure there's a plan for when they leave hospital
Make sure there is a plan for when the person with a learning disability is discharged from hospital. A discharge plan could include issues such as transport from the hospital, a place to stay, medication and confirming what their ongoing care plan is when they go home (for example, from the GP or from a council social services department).
Read more about being discharged from hospital.
It's important for everyone to be a healthy weight. If you look after someone with a learning disability who needs to lose or gain weight, there are ways you can help them.
Having a learning disability can make it harder to understand new information, learn new skills and communicate.
Some people with learning disabilities may find maintaining a healthy weight difficult, and they may need help understanding information and advice about diet and nutrition, cooking and regular physical activity.
Learning disability charity Mencap says that people with a learning disability are more likely to be either underweight or overweight. People with profound and multiple learning disabilities are often underweight because of poor feeding and swallowing, while others are overweight because they aren’t getting the support they need to make healthy diet and lifestyle choices.
In some cases, learning disabilities are associated with other conditions that make being overweight more likely, such as Down's syndrome, which also affects a person’s height, or Prader-Willi syndrome, which causes an insatiable appetite. These factors can make weight management particularly challenging.
If you care for a person with a learning difficulty, it’s important to think about helping them to maintain a healthy weight. Being underweight or overweight raises the risk of serious health problems, and can affect their quality of life.
Body mass index (BMI) is generally the best measure of whether someone is a healthy weight for their height. You can check the BMI of someone you care for by using our BMI healthy weight calculator.
However, it's sometimes not enough to use BMI to check the weight of someone with a disability, as this may not give the full picture. For example, the person may have a health condition that can affect their weight or height. If this is the case, their GP can help.
What you can do
Elaine Gardner is a dietician with experience in working with people with learning disabilities, and their carers.
Elaine says it is important to think about the lifestyle of the person you care for, and how it can be changed to promote a healthy, balanced diet and to include more physical activity, if needed. She says good communication is key:
“People with learning disabilities live in all kinds of situations. Some may live independently, sometimes with help from support workers. Others may live with their carer,” says Elaine.
“Whatever the circumstances, it’s really important that, when interacting with the person you’re looking after, you give them information and support to encourage healthy choices.”
If you are concerned about the weight of the person you care for, set a time to sit down and talk about it.
A conversation that includes the person with learning disabilities, carers and support workers is a good way to begin to make lifestyle changes.
It may also be necessary to ask the person's GP to investigate any underlying medical problems that may be related to unusual weight loss or weight gain.
Elaine suggests how diet changes can be made in the following situations:
- Shopping for food: Help the person you care for to draw up a shopping list of foods and drinks. Using pictures on the list is helpful if they are shopping on their own and have trouble reading. Set a time for a weekly shop, and encourage healthy choices.
- Cooking at home: Draw up a cooking schedule for the person you care for. Make sure it contains healthy meals, and that, if necessary, support is provided around mealtimes to ensure that regular, healthy meals are eaten. See below for resources that can help you to plan and make healthy meals for the person you look after.
- Between meals: Encourage the person you care for to make healthier choices when buying snacks – for example, by swapping biscuits for fruit.
- Out and about: If the person you care for eats out regularly in restaurants or a canteen, encourage them to make healthy choices from the menu.
- Keep records: If you feel that the person you care for isn't eating properly, keep records of the food they eat and the food they waste, to build up a picture of their eating habits.
Counting calories? Check out our handy guide to What 100 calories looks like. You might be surprised at the differences between certain food groups.
If the person concerned needs to increase their energy intake to gain weight, one step is to look at increasing their portion sizes. If, however, their appetite is poor or they are unable to eat more, it may be appropriate to give them calorie-enriched foods or drinks to supplement their diet, or to fortify (add essential nutrients) their food on a short-term basis. However, you should first seek advice from a health professional, to ensure that the person's individual needs are met and they have a tailored nutrition plan in place to monitor any dietary supplements.
Exercise is key to managing weight, not only because it helps burn calories for those needing to lose weight, but because it can also stimulate appetites for people needing to gain weight.
How can you help the person you care for build more physical activity into their day? Elaine suggests talking to them about the activities they are interested in. Think about scheduling regular physical activity and providing support, if necessary, to help ensure that it happens.
To make sure the person you care for is getting enough exercise, check what their recommended physical activity guidelines are. For example, mobile adults aged 19-64 should try to be active daily and do at least 150 minutes (2 hours and 30 minutes) of moderate-intensity aerobic activity, such as cycling or fast walking, every week.
Find physical activity guidelines for:
Getting more support
If you need more support in helping the person you care for to manage their weight, go with them to see their GP.
“People with a learning disability should have an annual health check with their GP,” says Elaine. "If you are concerned about their weight, then make an appointment.
“Their GP can advise on physical activity and healthy eating. In some areas, there are community support programmes for people with learning disabilities and their carers, which teach people about how to maintain a healthy weight. Their GP will know what’s available locally and be able to refer them.”
If the person you care for is overweight, ask the GP if there is a community weight management service they can benefit from. The service aims to help people:
- achieve a sustainable weight loss
- limit further weight gain
- get into a regular eating pattern
- achieve a balanced diet
- become more physically active
- reduce overeating and portion sizes
- learn new long-term lifestyle skills
Anyone who wants to use the service is screened by a qualified weight management adviser to determine their suitability for the service and their programme preference. For some people with learning disabilities, a one-to-one programme may be available.
See below for resources that can help with physical activity.
Resources for weight loss and learning disabilities
- You can download "easy read" leaflets about diet and exercise from the Easyhealth website.
- Mencap and The Caroline Walker Trust have produced healthy diet resources to help those who care for people with a learning disability. These include a practical guide on how to encourage healthy eating, together with healthy recipes and photographs of meals and snacks. The guide costs £15 as a hard copy or £10 to download, and can be bought from The Caroline Walker Trust website.
- For more healthy diet advice for the person you care for, look at the Eatwell Guide and get advice on managing the amount of salt, fat and sugar in meals from Change4Life’s Be Food Smart campaign.
- Special Olympics Great Britain helps people with learning disabilities become involved in sports, from football and tennis, to alpine skiing and fencing. Find your local club to see what's available in your area.
If you care for a child with a learning disability, there's more help and advice in our learning disabilities section.
"I work as an office assistant for United Response [a charity supporting people with learning disabilities]. I have worked here since February 2008 and I like it a lot. I laminate items, photocopy and shred. I type up letters and do searches on the internet. I greet visitors to the office, I offer help to the other staff, and I take care of the recycling. I haven't used the fax machine yet but I'd like to learn.
"I like working in a team and I enjoy the work that I do. I like learning new jobs and getting support from the other staff. I want to work more!"
Home and friends
"I live with my mum, Olive. I like living with her but one day I would like to live independently.
"In the evenings I like going to social clubs because I'm a sociable person. I like listening to music, especially Take That. I enjoy cooking, and swimming is my favourite sport. I text my friends on my mobile and this is my favourite way to keep in touch with them.
"When I meet up with my friends it's usually at social clubs in the evenings or at college. Sometimes I arrange to meet them at their houses or at the pub.
"I go to college three days a week and I like my studies. I like to read encyclopaedias because I like to know everything! I enjoy spending time with my brother and sister and going on outings. My favourite places are the Trafford Centre and Manchester City Centre because I like to go shopping."
If I need support
"Doing something new can be difficult for me, so I need some support the first and second times. But after that I'm OK. At home my mum and I work as a team and take turns with all the household jobs. Using the oven can be difficult, but I can do it with support from my mum.
"At work, the other staff help me if I need it. At home I have help from my mum and sometimes my sister and brother and other family in Manchester. At college my tutors help me with study problems. My friends help me with any worries and advice, which is what friends are for.
"They support me by listening and talking to me in private, especially my best friend Karan. The staff at work help me by talking and showing me. My family help me by encouraging me to become more independent and try new things."
School and the future
"I went to school in Peterborough. I liked the education and made a few friends. I like learning but I didn't like the people very much because I got bullied. My favourite subject was English – I liked writing stories and diaries about my life.
"I liked science too because I learnt about how things work, such as the human body. I didn't like maths but I'm good at it now. I didn't like the bullies or being picked on.
"In the future I would like a full-time job in an office. I would like to learn to drive. I'd like to have a family of my own, to get married and have children. I'd like to go to Australia to visit family, and visit more family in Ireland too. I'd like to do some travelling. And I'd like to see Take That in concert!"
For information about helping people with learning disabilities to live the life they want, visit United Response.
Michael Cooke, 22 when interviewed, has Asperger syndrome and lives at home with his parents and three brothers in Manchester. He works at an arts centre a few evenings a week and likes playing football.
"I am a front-of-house assistant at Sale Waterside Arts Centre. I take tickets, work on the bar and help customers. My job is marvellous. I like mixing with all the staff and socialising. I get on well with everyone. It's only a few evening shifts and I'd like to work full days as I'd like more to do. I've been there for around six months."
Michael's family and friends
"I live with my family: my mum, dad and three younger brothers. I love living at home, but it can be noisy with my brothers. In my spare time I play on my Xbox, go walking in the country with my Nan, and help my mum at home by cleaning and vacuuming.
"I meet my friends when I go out and play football regularly. I also go to Aspirations, which is a group that provides social opportunities and support for people with Asperger syndrome. I have a lot of friends there."
Support at work
"I found my job through Trafford Supported Employment, a job-matching service run by the charity United Response.
"Sometimes I find using the tills at work difficult. When I started my job, Laura and Gemma, my coaches from the charity, helped me to learn the tills. Now if I get stuck, a member of staff lends me a hand. At first I was shown what to do – somebody pressed the buttons and I copied. But now I'm given instructions."
Michael's experiences at school
"When I was at school I was a bit hyper and I didn't go that much. It wasn't my sort of environment. I didn't like it. I felt like there was always a teacher watching over you. In the end, I had a home tutor instead of going to school, which I really enjoyed because she listened to me.
"I did like college, though. I went to Loreto College in Manchester. You could have your own space there, and you were treated like an adult.
"I would like to have a full-time job at somewhere like B&Q. I did a placement there not long ago and really liked it. I would just like to be working full-time, to keep busy."
Find out more about living with autism, including getting a diagnosis for autism, the help available, and the experiences of people with the condition.