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Why hospital disability coordinator should be a must-have role

Mencap’s Edel Harris says a disability coordinator could provide a vital link between hospital and community, and free up nursing time

Mencaps Edel Harris says a disability coordinator could provide a vital link between hospital and community, and free up nursing time

As professionals working in the field, we all know that people with a learning disability face severe health inequalities throughout their lives. Sadly, this often starts in childhood sometimes before the child is even born.

Mencaps new childrens campaign part of the long-running Treat Me Well campaign aims to close this health inequality gap.

A disability coordinator would provide a vital link between the hospital and the community supporting and signposting families to ensure they get the medical

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Mencap’s Edel Harris says a disability coordinator could provide a vital link between hospital and community, and free up nursing time

Picture shows happy couple with a Down's syndrome baby
Picture: Alamy

As professionals working in the field, we all know that people with a learning disability face severe health inequalities throughout their lives. Sadly, this often starts in childhood – sometimes before the child is even born.

Mencap’s new children’s campaign – part of the long-running Treat Me Well campaign – aims to close this health inequality gap.

‘A disability coordinator would provide a vital link between the hospital and the community – supporting and signposting families to ensure they get the medical and social support they need’

One of the things we are calling for is the implementation of a new ‘hospital disability coordinator’ role to support families of children with a learning disability, from the point of diagnosis and beyond.

Nurses provide an invaluable role in supporting people with a learning disability to get the healthcare they have a right to and the role is not intended to replace learning disability nurses. Instead, the addition of this non-clinical role would help to free up nursing time.

Emmerdale storyline shows how little support families can receive

A disability coordinator would provide a vital link between the hospital and the community – supporting and signposting families to ensure they get the medical and social support they need.

The initial response from the NHS trusts we have contacted in England has been positive.

A recent storyline on the ITV television drama Emmerdale has highlighted just how desperately needed this role is.

In the programme, a couple are left to process a huge amount of information, without the right advice and support, and to make a decision on whether to terminate a pregnancy following a prenatal diagnosis of Down’s syndrome.

‘Closing the inequality gap, starting in childhood, is vital to a better future for people with a learning disability’

Emmerdale’s storyline has shown just how little support some families receive at this critical time: sadly, we know this is far too common.

Worrying experiences of negativity and prejudice from healthcare professionals

Mencap - Supporting Families Through a Learning Disability Diagnosis Mencap’s recent survey of 116 families of children with a learning disability aged between 0-5 years found only 31% of parents or carers said they received the right type and amount of information from the hospital care team in the weeks and months following their child being diagnosed as having a learning disability.

Worryingly, 45% reported they had experienced negativity, prejudice or discrimination from healthcare professionals.

Yet we know that having access to the right specialist support and health information – and communicated in an appropriate way – is fundamental to achieving the best outcomes for the whole family.

As part of Mencap’s campaign, Supporting Families Through a Learning Disability Diagnosis – a Resource for Healthcare Professionals has been released.

Closing the inequality gap, starting in childhood, is vital to a better future for people with a learning disability.

And, to achieve this, it is crucial that families get the right information, advice and access to support – at the hospital and in the community – to give their child the best possible start in life.

How learning disability nurses can help colleagues support parents at diagnosis

Learning disability nurses are instrumental in providing guidance and support to other healthcare professionals to ensure they can meet the needs of people with learning disabilities and their families or carers.

When a parent receives a diagnosis telling them that their child has or will have a learning disability they need the non-judgemental support of healthcare professionals they encounter.

We encourage every learning disability nurse based in a hospital to share our new resources with colleagues on supporting families through a learning disability diagnosis. These offer tips on:

Communication iconCommunication The way that you talk about learning disability could have a lifetime impact on children and their families

Checking assumptions Every child with a learning disability is a unique individual. Make sure you’re not making assumptions about their life chances, and don’t assume that their life is limited or will be unhappy or unfulfilling just because they have a learning disability

Support for screening process iconSupporting the screening process Healthcare professionals should explain that the decision whether to have antenatal screening tests is the choice of the expectant mother, and you should ensure that they understand what those decisions mean for them and their baby

Acting sensitively Be sensitive and empathetic. If there is a heightened chance of a genetic condition being present in the foetus, families should receive balanced information about it. It is essential that no judgement is made about the condition or a family’s decision as to how to proceed

VAccess to counselling Healthcare professionals should refer all new parents who receive a genetic difference diagnosis to genetic counselling

Signposting to information Parents are entitled to accurate, up to date and balanced advice and information. As well as providing information yourself, you should signpost expectant parents to external organisations and support networks

Source: Adapted from Mencap (2020) Supporting Families Through a Learning Disability Diagnosis

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