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Doing simple things can improve care for people with learning disabilities

Talking to patients and those close to them, as well as checking health passports, can help to improve treatment 

Talking to patients and those close to them, as well as checking health passports, can help to improve treatment 


Picture: Roy Mehta

Read anything about progress on the treatment received by people with learning disabilities since the publication of the Winterbourne View report and you will read about ‘commitment to transforming care’. 

Why then, despite all good intentions, do reports suggest that in NHS trusts people with a learning disability are still not being identified, that the need for reasonable adjustments are not being recognised and we are not complying with the law, particularly the Mental Capacity Act 2005?

We shoot ourselves in the foot the whole time and fail to do the simplest things that can help: speak to the person themselves, their families and carers, or look in the health passport that tells you what is important to meet that person’s needs. 

Check the passport

My daughter Rachael attended an appointment with a mental health service armed with her health passport. The letter that followed said: ‘Rachael spent the appointment yawning and appeared bored and distracted.’ 

'The answer must lie in integrating programmes to create a nursing workforce that can transfer seamlessly between services'

If the nurse had looked in her passport she would have seen written ‘when I am anxious and distressed I yawn’ and been able to adjust her world view accordingly. 

I know from my role in acute care that this type of failing is depressingly common. It should not be difficult to fix, but somehow is wedged firmly in the ‘too difficult’ corner. 

Holistic care

We cannot continue to isolate the skills needed to provide high quality, reasonably adjusted care in the undergraduate learning disability programme – the numbers coming through are just too small. The answer must lie in integrating the programmes to create a nursing workforce that can transfer seamlessly between services, as well as settings. 

We talk of dual roles between general and mental health nursing but maybe we need to consider tri-roles to produce the flexible workforce needed to deliver true holistic healthcare in the 21st century. Something needs to be different for all the Rachaels out there. 


About the author

Wendy Johnson is head of safeguarding adults at risk and nursing lead for learning disabilities at Great Western Hospital NHS Foundation Trust in Swindon. She writes about life with her daughter Rachael, who has autism

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