Going into hospital with a learning disability

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?

Read more about consenting to treatment and the Mental Capacity Act. GOV.UK has information about making decisions on behalf of someone.

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.