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Tuning in to the care needs of people with learning disabilities

To mark Learning Disability Awareness Week, Karina Marshall-Tate, Head of Education & Training, at the Estia Centre, South London and Maudsley NHS Foundation Trust, blogs about optimising care for people with learning disabilities, and tuning in to their mental and physical health.

“Turn on, Tune in, and Drop out.”

Karina Tate-MarshallThis popular phrase, made famous by Timothy Leary has epitomised the counter culture era of 1960s. This culture sought to bring people together to activate their senses (turn on), interact harmoniously with the world around (tune in) and to give up preconceived ideas, move with change and challenge the status quo (drop out).

This journey goes to an area of healthcare that is often given little attention or resource, where it is possible to die from constipation or to be given a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) just because of who you are.  It takes us on a journey where it is possible to experience multiple mental and physical comorbidities throughout the life course. This world is the world of people with a learning disability. It doesn’t have to be like this. We all have the power to make small changes to our daily practice that will have a huge impact on the health and wellbeing of people with a learning disability.

So what are these small changes I hear you ask? Well, they largely centre around five key areas:

  1. Anticipating likely need and making reasonable adjustments. This could include ensuring the availability of easy read material in your clinical area, having longer appointment times or seeing a patient in an environment that is more suited to their needs.
  2. Diagnosing and treating illness quickly – people with a learning disability can be seen as a high-risk population with multiple comorbidities throughout the lifespan. Act quickly to find out what the concerns are and note any changes. Be mindful that people can present with common disorders but at the end stage and may show atypical signs and symptoms. Don’t assume that the presentation is because of the learning disability. Make proactive referrals to specialists and always consider mental and physical health conditions.
  3. Co-ordinating care and sharing information - there can often be many people involved and all with different roles so try to understand this and make use of this circle of support.
  4. Understanding and adhering to the law (Mental Capacity Act, Human Rights Act, Mental Health Act, Equality Act) these laws protect our most vulnerable and try to ensure equity across healthcare services
  5. Listening to people with a learning disability and their family and carers. Family and carers have a wealth of knowledge and experience that will help you to deliver more effective, quality care and get more from your consults - use their skills and work collaboratively in care planning and care implementation for improved health outcomes and experiences of care.

So, next time you meet a patient with a learning disability take the time to turn on to their world experience -  slow things down -  allow extra time; tune in to their frequency – communicate differently – think what is that behaviour trying to tell me, is there a mental and/or a physical health condition underlying this and drop out – challenge the status quo - do things differently – make reasonable adjustments and value the person before you.

Check out the Working with People with Intellectual Disabilities resource on the King’s Health Partners Learning Hub. The interactive e-learning module helps staff gain a deeper understanding of what intellectual disabilities are, and how to adjust practice and communication to better support these patients and service users. 

You can also find out more about meeting the needs of people with learning disabilities on the General Medical Council website and Mencap website.