Abstract
Introduction: The National Clinical Guideline for Stroke charts the patient journey through hospital, rehabilitation, vocational rehabilitation & secondary prevention.
However of 238 pages, <2 pages deal with ‘Social integration & participation’, <1 page addresses ‘Long-term support services’, yet someone with a stroke may live for another 40 –50 years.
Method: The National Clinical Guideline for Stroke (2023) & related Acquired Brain Injury Guidelines were reviewed through the lens of United Nations Convention on the Rights of Persons with Disability (UNCRPD).
Results: Guidelines are largely based on models of service delivery, professional practices, expert opinion, available research, input from professional bodies & third sector organisations.
The UNCRPD definition of rehabilitation appears in in the current stroke guideline but reference to the human and disability rights of patients is not particularly visible.
Evidence Based Practice is not enough
Evidence Based Practice Clinical Stroke Guidelines are largely aimed at Health & Social Care services & professionals, yet:
• Patients & their families feel abandoned on completion of their care;
• Clinicians report their patients “are going home to nothing. Absolutely nothing!”, and;
• The disability that patients & their families experience for the rest of their lives is largely caused by the attitudes & barriers they encounter in society.
Human Rights Based Guidelines: Human Rights Based Stroke Guidelines should be developed which encompass Evidence Based Practice as well as the duties and responsibilities of states who have signed up to the UNCRPD.
Guidelines should identify actions within government departments of: Culture, Media, Sport, Education, Housing, Work, Environment & Transport which would significantly improve the lives of people living with Stroke and their families.
This is a societal model of rehabilitation, or reverse engineered rehabilitation.
The knowledge, skill, background and experience of Health & Social Care professionals is key in identifying the “attitudinal & environmental barriers that hinders the full & effective participation of their patients in society” as well as coming up with solutions on a population basis.
Human Rights Based Practice in The Arts & Sport: At Brain Injury Matters (NI) we model & deliver long-term rehabilitation based on the UNCRPD. We showcase mainstream participation in The Arts & Sports “on an equal basis as others”.
Our Creatives & Sports people (formerly know as patients / clients) demonstrate that people with significant Physical, Cognitive, Behavioural & Emotional impairments can take part in mainstream Arts exhibitions, festivals & Sports events “on an equal basis as others”.
The Arts & Sports rehabilitation should be a key section in stroke guidelines as described in the UNCRPD “Article 30 –Participation in cultural life, recreation, leisure and sport.”
Conclusion
• This UNCRPD Human Rights Based model of rehabilitation aims to eradicate exclusion, challenge societal norms & change expectations.
• Human Rights Based Stroke Guidelines would promote the principles of the Charter of the United Nations (1946) of human dignity, worth & rights.
• Allied Health Professionals and the wider multidisciplinary team have a key role in Human Rights Based Practice, particularly in The Arts & Sports."