Since people with a learning disability often experience significant problems in accessing healthcare, a new report has set out the reasonable adjustments that should be made to ensure adult surgical patients with learning disabilities receive good quality healthcare.

The report, published in the journal Anaesthesia, states that each stage of a patient's journey through the hospital needs to be anticipated and planned for in order to reduce health inequalities.

This should be done by ensuring that healthcare staff receive thorough training, there are regular multidisciplinary team meetings for planning and best interest assessments, and establishing an alert system to ensure staff are aware the patient has a learning disability and will require reasonable adjustments.

Learning disability training for healthcare professionals

Ensuring that staff are trained in knowing how to deliver care appropriately is key to improving health outcomes for people with learning disabilities.

This is because sometimes taking a history or examination can be impossible due to communication difficulties or challenging behaviour. The same is true for delivering treatment, where lack of compliance becomes an obstacle.

For this reason, hospital wards should have learning disability champions at a nursing or healthcare assistant level, as well as a clinical lead for learning disability and an acute liaison learning disability nurse to provide a link between the hospital setting and primary healthcare.

These individuals have multiple roles including being a source of knowledge and advice for the ward team and a point of contact for patients and relatives or carers.

The report also suggests that hospitals have operating department practitioners specialising in learning disability care and recovery staff with advanced skills, as emergence from anaesthesia may be more difficult for patients with a learning disability.

Ensuring staff are trained in this area is an important way of ensuring high quality care and avoiding the use of physical restraint where possible.

Recognising the patient has a learning disability

Prior recognition of a learning disability is essential to achieving smooth, good quality healthcare. This can be achieved by:

  • Including information about the patient’s learning disability in the GPs referral letter
  • Notifying the learning disability team of pending admissions
  • Ensuring the learning disability nurse attends outpatient appointments to assist with the surgical admission
  • Presenting completed pre-assessment forms at multidisciplinary team meetings.
  • Placing an alert on their electronic records, such as a ‘reasonable adjustment flag’, that will identify patients in advance and for repeat attendance.

The Mental Capacity Act and obtaining consent

The Mental Capacity Act requires the decision-maker to assess the patient's mental capacity and complete the appropriate consent form before any planning can take place.

It is important to note that if the patient lacks capacity, a family member or friend will need to be involved in the decision-making process. It is important to note that paid carers cannot be used as a substitute in the consent process.

An independent mental capacity advocate (IMCA) may also be required to give a best interest view, as well as the opinions of other healthcare professionals.

Due to the complexity of the consent form, it must be completed ahead of the surgery, and in complex cases, a best interest meeting may need to be held.

The authors note the importance of considering what the patient wants, as even if they lack capacity to make decisions about the finer details, they may have very clear ideas in the wider context of the surgery.

For example, while they may not understand the potential risks of anaesthesia, they may be able to express their preference for the type of anaesthetic induction, or who will accompany them to hospital.

Ultimately, decisions should not be influenced based on appearance, behaviour, age, degree of learning disability, perceived quality of life or other discriminating factors, and the starting assumption must always be that the patient receives the same care as someone without a learning disability.

Regular planning meetings and making reasonable adjustments

Multidisciplinary learning disability teams should be established and regular meeting should be set up to ensure effective admission planning.

In these meetings, the complexity of each case should be discussed, consent forms should be reviewed and dates and place of admission should be confirmed, along with appropriate reasonable adjustments.

The report outlines several questions that need to be asked to ensure that reasonable adjustments are made, such as:

  • Can the patient attend for nurse-led pre-operative assessment?
  • Will the patient willingly leave their home to come to hospital?
  • Will the patient willingly leave the car and walk into the hospital?
  • Where should patients be admitted?
  • Will the patient agree to transfer into the anaesthetic room or co-operate with the induction of anaesthesia?
  • Will physical intervention be required?
  • How much time should be allocated?

By asking these types of questions, the authors say people with learning disabilities will be better supported to access healthcare which in turn will reduce the number of premature deaths.

While the report focuses on patients requiring surgery, the authors say some of the principles are transferrable to other areas of hospital and primary care, and to patients who lack capacity for other reasons, such as those with dementia.

 “However, what remains clear is that both community and hospital services need to address the inequalities in healthcare faced by people with a learning disability,” they conclude.