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Coming into Hospital with a Learning Disability

Coming in to hospital when you have a learning disability can be scary and difficult for many reasons. People with a learning disability may find it difficult to understand what is wrong with them, they may have had a bad experience in the past which has made them scared now, their needs may not be understood by the doctors and nurses or they may have several very complex health needs.

For this reason most acute hospitals now employ a learning disability acute liaison nurse (ALN). The role of the ALN is to provide support and advice to patients, their carers and staff in order to improve the experience of people with a learning disability in hospital. We do lots of training with all staff members throughout the hospital, from the ward clerks to the doctors and consultants to help them understand the needs of people with a learning disability. Ask whoever is in charge of the ward or department for the details of the ALN in your hospital and to make a referral to them.

It is recommended that people with a learning disability should have a hospital passport when coming in to hospital. The aim of the hospital passport is to provide all the important information that the ward staff need to know about the patient. For example, how that person communicates, how to know if the person is anxious, the support they require and how they indicate pain. The purpose is to ensure their needs are not overlooked. For example some people with a learning disability may not be able to tell you that they are in pain, may start to become agitated, aggressive, quiet or withdrawn, or may become abusive to themselves or others. Everyone is different and how they express themselves and behave may be different too. It is important that staff know that information to ensure they are receiving the right care and support. 

Sometimes people’s behaviour may not be understood and healthcare professionals can think they are behaving in a particular way because they have a learning disability, whereas they are behaving like that because they are in pain. This is called diagnostic overshadowing. A report by Mencap in 2007, called ‘6 Lives’, looked at investigations into the deaths of people with a learning disability in NHS or Local Authority Care and found that there were delays in care and instances of diagnostic overshadowing, where people's needs were not understood and patients died as a result. There have been more reports since then. The reports recommend that people with a learning disability should have a hospital passport and that hospitals should have an ALN. They also recommend that people with a learning disability should have a flag against their name to let staff know that they have a learning disability.

Sometimes a reasonable adjustment may need to be made in order to overcome barriers to accessing healthcare. Examples of reasonable adjustments could be things like offering a double appointment slot, having the first appointment of the clinic to avoid waiting, having a quiet area to wait, and providing information in easy read formats.

Finally, we need to consider consent. If the person with a learning disability is unable to give consent a Mental Capacity assessment would need to be done by the decision maker – that is the person proposing that treatment is necessary. Capacity is decision specific, so a person with a learning disability may have the capacity to manage their finances but they may not have the capacity to decide whether they have an operation. If the assessment finds that the person lacks capacity, a 'best interests' discussion would need to take place, the next of kin would need to be consulted and their opinion recorded. If the patient has a lasting power of attorney, the person with lasting power of attorney can give consent if it is regarding the health and welfare of the patient.

Further resources

Easy Health – a great website full of accessible information 

Hospital Passport

The Mental Capacity Act

Questions to ask when you go to the doctor or hospital

Written by: Tamara Mcnamara. Acute Liaison Nurse - learning disability, Royal Free London NHS Foundation Trust.