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'Diagnostic overshadowing' and a lack of continuity are behind many care failures

Advocating effective communication on a patient's behalf can be tricky in learning disability nursing, but putting a support plan in place will benefit all, writes Simon Jones

Advocating effective communication on a patient's behalf can be tricky in learning disability nursing, but putting a support plan in place will benefit all, writes Simon Jones

It is a statement of the obvious that if you have a learning disability then one of your main challenges is communication. You may not have verbal language or, if you do, it may be limited. Because of this the people who support you need to do more to help, particularly with your health.

Evidence shows that people with a learning disability have poorer health and reduced life expectancy than the general population, and any limitations in a person’s ability to communicate symptoms is critical.

Reasons

Unfortunately, when those who support you try to communicate and advocate on your behalf, they are often not listened to. That does not make sense and I think this is for two reasons.

One is diagnostic overshadowing. This means that a change in a person’s character or behaviour is too often attributed by clinicians to their learning disability, particularly those with limited knowledge of how to meet the health needs of a person with a learning disability. In my experience, if a person changes or ‘does not look right’ the first thing to check is their health. Health professionals must listen more closely to families and carers because they will have potentially lifesaving information.


Oliver McGowan. Picture with consent.

The inquest into the death of Richard Handley, who died from complications arising from constipation, is yet another sad reminder that we still have much to do.

Mencap’s new Treat Me Well campaign is about how health services need to get better at listening to families and carers, and also about making reasonable adjustments to health appointments. Both these elements would allow more time and in a suitable environment which will enable more detailed checks to be carried out and more evidence gathered using the knowledge of families and carers. 

Voluntary Organisations Disability Group have produced a guide for people attending appointments called Preparing to Visit a Doctor so families and carers can be prepared for appointments. But if the information taken to an appointment is not used – then this is more than just being short sighted.

Ensuring lessons are learned

I met Paula McGowan whose son, Oliver, she believes, died from a preventable cause. His family tried to tell clinicians that he was allergic to certain medications, but they are convinced that they were not listened to, and last year Oliver died. An inquest is being held to establish the facts. She knows nothing will bring Oliver back, but she is desperate to ensure lessons are learned.

'A person’s support plan should belong to the individual it is written for'

The second failing leading to inadequate healthcare is a lack of continuity of care specifically the passing on of information from one support provider to another. If someone transferred to another GP you would expect all their health records to go with them. Unfortunately, the same cannot be said of support plans.

I work in the independent sector and all too frequently the new provider is given little information from the previous service. A person’s support plan should belong to the individual it is written for, so there should be no question that – if they move provider – it goes with them.

Often support plans contain vital health information, as in the case or Richard Hanley. If this is lost then the consequences can be catastrophic.


About the author

Simon Jones is lead behavioural practitioner and nurse consultant with Consensus (part of the Caring Homes Group) and chair of the RCN learning disability forum

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