Over the past eight months I've been writing and posting articles on LinkedIn as part of my work with DWF's Bodily Injury Research Garage. This is the fourth in a series of articles broadly exploring the topic of peer mentorship for the disabled and spinal cord injured population.
Anyone who has been following these articles will know already that I am a member of the American Congress of Rehabilitation Medicine and that I recently returned from the annual conference of ACRM in Atlanta, GA.
Just as a brief aside: for anyone lucky enough to visit Atlanta it is well worth a trip to the incredibly powerful Centre for Civil and Human Rights as an illustration of how far (or not) the world has come… Rather like a teenager we think we have grown up but there is an awful long way to go. It strikes me that is not only true of civil and human rights but also the way in which we treat and empower the disabled population.
As an illustration of how far (or not) the world has come… Rather like a teenager we think we have grown up but there is an awful long way to go. It strikes me that is not only true of civil and human rights but also the way in which we treat and empower the disabled population.
At ACRM I was fortunate enough to attend a peer mentorship session led by Julie Gassaway (Director Health and Wellness Research) and the incredibly impressive Pete Anziano (Peer Liaison Lead and Instructional Designer) both of whom are based at the Shepherd Centre.
Shepherd run a peer mentorship program within their Centre. Self efficacy is the primary outcome for the program. Shepherd are clear that their mentorship program is not a replacement for clinical treatment. Instead their aim is to, quite simply, empower and teach individuals who have sustained a spinal cord injury.
Shepherd have always run self care classes for spinal cord injured persons but now (following some debate) the majority of classes are being run by peers rather than the nurse clinicians. Anecdotal information arising out of those classes is that the patients are significantly more engaged and that they are encouraged to talk about the issues facing them in a supportive environment where the lead will deliberately open up about their own trials and tribulations in order to expose their vulnerability. This isn’t designed as a lecture given by an able bodied person, this is a shared experience and, as we have come to learn, shared experiences are developmental components of culture.
To support the classes, Shepherd have 5 employed peers and there are considerable video resources available for patients (similar examples of which can be accessed via the link here).
The Centre also relies heavily on volunteers coming in to mentor the patients (and their families). Pete talked passionately about how an individual's goals and life vision can be completely destroyed following a spinal cord injury to the extent that (being surrounded by clinicians) they see no future beyond attempting to avoid secondary complications.
I think we would all agree that is no kind of life so the peer support, videos and the personal topics that they explore are aimed at emphasising to patients that they can get back towards enjoying themselves and whilst their goals and their vision of the future may be different, they are still equally valid and can be achieved.
Patients are exposed to real life stories. Peers explain their difficulties, their challenges and put those challenges into real-world context. The tunnel may be different but there is light at the end of it for those who are empowered to take control for themselves. Patients become more willing to engage in therapeutic activities. They challenge themselves more because they see their peers doing those activities: ‘if they can do it so can I…’
Attendees at peer sessions are encouraged to lead the discussions, to ask questions about issues which may be worrying them from peers who have been there, seen it and done it.
Once again we return to the theme that peers are the key distinguishing factor. Patients can relate to them as having the same issues and as having learned (in some cases the hard way) how to deal with those issues and come out the other side.
This is not a case of clinicians, nurses or case managers suggesting how a disability should be treated but, rather, peers explaining how to cope with a disability, how to deal with the issues which arise and to feel engaged in the process. With the right support hopefully goals and ambitions can be re-evaluated and patients can get on with living life in [admittedly] a very different way to that anticipated pre-injury but, most importantly, a fulfilling way.
Life should not be about little other than the constant battle to avoid secondary complications.
Storytelling becomes an incredibly powerful weapon in the education of spinal-cord injured persons and their families. Shepherd employ 5 staff peers and have 100’s of mentors meaning that that patients can be matched by age, sex, disability level, complications or otherwise.
Mentors are carefully checked and vetted. Their role is not about motivational speaking. Mentors are only present to speak to the issues which are important to the patients and, from their own experiences, deal with those issues.
Shepherd hold a database of mentors going all the way out to ventilator dependent. Patients are followed up 180 days after discharge and, upon discharge, are given ways to stay in touch. The Shepherd Centre operates a Facebook group and there are number of linked video resources available via YouTube and Facebook.
Shepherd’s own research suggests that for the population going through their peer program they see significantly less days of re-hospitalisation than for patients within the control group which tends to suggest to me that they are doing something right and there is real value to be gained by those patients.
I leave you with this thought: is there a way to fund a pilot study of a similar program in the UK? Big oak trees grow from little acorns: through sponsorship, donations or otherwise could we in the insurance industry fund and learn from a similar program to that being operated at the Shepherd Centre?
For more information, please contact Ian Slater on 0161 603 5033 or Ian.Slater@dwf.law.
This information is intended as a general discussion surrounding the topics covered and is for guidance purposes only. It does not constitute legal advice and should not be regarded as a substitute for taking legal advice. DWF is not responsible for any activity undertaken based on this information.