Supporting people with learning disabilities to take care of their breasts

What you can do

If you can, try to talk to the person you support about checking their breasts. You can download our guide for people with learning disabilites and their carers to help you explain how to be breast aware and what to do if they have any questions or concerns.

Woman with learning disabilities and her carer

You can reassure the person you support that most breast changes are not cancer. Most are due to other things such as changes before a period or the breasts developing or ageing.

Some will be because of a benign (not cancer) breast condition. These can be easily treated or often won’t need any treatment at all.

Whatever the cause, it’s important to see the doctor as soon as an unusual change is noticed.

If you can’t discuss being breast aware with the person you support, contact your health facilitation team or learning disability nurse for help.

Helping someone to be breast aware

There is no right or wrong way for someone to check their breasts. The key thing is to encourage the person you support to get into the habit of regularly looking at and feeling their breasts if they are able to do so – ideally every four to six weeks. This time frame can help them get into a routine. They can then get to know how their breasts are normally and so notice any unusual changes.

They could check their breasts when getting washed, using a soapy hand. Another time could be when they are getting dressed, especially when putting on a bra or vest.

Practising breast awareness in a private and safe place such as the bathroom or bedroom is important so that people feel comfortable and confident.

If the person you support isn’t able to check their breasts on their own, try to look out for changes in the appearance of their breasts as you help them with washing and dressing. The changes to look for are pictured and described here. If it’s helpful you can look at the pictures and explain the changes with the person you support.

Only a doctor or specially-trained nurse should physically examine the person’s breasts.

Seeing the doctor

It’s important for people with learning disabilities to have a health check at least once a year. During the health check you can ask the doctor to examine the breast area of the person you support if either of you are concerned. But don’t wait until the yearly health check if there is a change that needs to be checked.

If the person you support needs to see the doctor about a breast change it’s a good idea to be prepared so that you both get what you need from the appointment. If they are able to talk directly to the doctor, be there to support rather than speak for them. People with learning disabilities often complain that doctors talk to their supporter rather than to them.

  • When you or the person you support make an appointment, you can ask to see a female doctor if either of you prefer.
  • Write down any questions you would both like to have answered.
  • Note down when and how the breast change was first noticed.

The doctor will ask you or the person you support to describe what the problem is, plus any other changes that may have been noticed.

At the appointment, the doctor will ask a few questions. These could include:

  • have there been any breast problems in the past?
  • have any of the family had breast problems in the past?
  • when was the last period? Are the periods regular?
  • is there is any possibility of pregnancy?

The doctor will then ask permission to examine the breast area. This is done sitting or lying on an examination couch, usually behind a screen or curtain. If the doctor is a man he will ask for a woman to be present, perhaps the practice nurse or receptionist.

The person you support will need to take off their top and bra. The doctor will ask you or the person you support to point out the change(s). They will examine both breasts and under the arms by touching and looking at them. This can sometimes be a little uncomfortable but will only take a few minutes.

After the examination the doctor will explain what they found and discuss the next steps. These may include:

  • reassurance that changes are normal – they may ask you both to come back at a later date just to make sure everything is OK
  • if the doctor thinks it’s an infection, the person you support may be given antibiotics and have to come back in a week or so for a check-up
  • if the doctor is uncertain about the cause of the change, they will want to have it checked out by a specialist at a breast clinic. The person you support shouldn’t have to wait too long for an appointment; most people get seen within two weeks of seeing their doctor.

Try to make sure the doctor explains things in a way the person you support can understand, and that all questions are answered. 

Going to the breast clinic

If the person you support is referred to a breast clinic, they are likely to have a triple assessment. This is

  • a breast examination by a specialist
  • a mammogram (breast x-ray) and/or ultrasound scan
  • a possible biopsy to take some cells or a sample of breast tissue.

There is the option to come back later to have the biopsy once the procedure and the equipment have been explained.

If the person you support needs to have the biopsy, they are likely to get the results within a week. These are usually given at another appointment at the clinic or they may get a letter or a phone call saying no further action is needed. If it’s by phone the clinic can book an appointment to call so that you can be with the person you support if necessary.

View our PDF below explaining what happens at a breast clinic. You can also order a hard copy version. Email publications@breastcancercare.org.uk

What happens at a breast clinic PDF

You may also find our Benign breast conditions free factsheets useful.

Last reviewed: March 2017
Next planned review begins 2018

Let us know what you think

Please note that we cannot respond to comments. If you have any questions about breast cancer please contact the Helpline on 0808 800 6000.

Sign up for our newsletter

Related Publication