New guidelines published for social workers around Creutzfeldt-Jakob Disease

Document aims to enhance professionals' awareness around the rare and rapidly deteriorating condition

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The government has published new guidance specifically aimed at social workers working with people with Creutzfeldt-Jakob Disease (CJD) and their families.

The document, issued by the Department for Health and Social Care, marks the first time that such guidance has been updated since 2003 – partly as a response to the changing legislative framework with the advent of the Care Act 2014.

CJD, which entered public consciousness after the BSE or ‘mad cow disease’ scandal of the late 1980s and early 90s, sees 100-130 new cases annually in the UK across all its sub-variants.

But the condition, which deteriorates quickly and can involve extreme behavioural disinhibition and is always fatal, is particularly distressing for those diagnosed with it and their families.

Rapid response

The new guidance stresses the importance of responding “without delay” to cases involving people with CJD, who are often only diagnosed at an advanced stage and whose cognitive and other functions will decline rapidly.

“Social workers should avoid the use of standardised care packages and recognise the role families, communities and the adults’ own strengths and assets can play in meeting needs,” it says. A “whole family approach” should be adopted towards needs assessment, while care and support plans must be “creative” and geared towards fluctuations in need, the document adds in later sections.

It also underlines the importance of settling who is funding care, and appointing a key worker to coordinate a multi-disciplinary response, without delay.

The document signposts to a number of national resources, including individuals’ potential eligibility for the NHS’s Fast Track Provision, used where someone has a rapidly deteriorating condition that may be entering terminal phase.

It also points out the need for local authorities to ensure they issue sufficient advice around CJD and adult social care, noting a template published by Somerset council.

‘Empowering advice’

In an introduction to the guidance, the chief social worker for adults Lyn Romeo said she recognised that most social workers would never work with anyone with CJD.

But Romeo added that she hoped that for social workers who did find themselves supporting someone with CJD, the guidelines would prove “invaluable”.

“Social work practice is enabled by guidelines and the profession has long recognised that accurate information and advice are empowering – this is keenly felt by those social workers who encounter people whose health conditions require specialist consideration,” she said. “While each person is unique; those affected by CJD receive specialist diagnosis services, nationally coordinated health support and may have legal entitlements unique to this condition.”

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