Yes, sort of – some questions for further thought and without adequate citations

I have some experience of ‘trying’ to design and deliver community stroke rehabilitation, and lots of clinical experience of delivering services as a music therapist specialising in neurorehabilitation. Here are some details, facts and questions. There are answers to some of them, to be found in various citations, but I have been lazy and left them out. To be fair, a lot of info needs to be synthesised, and a proper discourse developed - this is rather 'thrown together'.

In 2013, I began a small trial using musical instrument playing exercises for upper limb (UL) rehabilitation following stroke – delivered in participants’ homes. We recruited 10 patients, they all completed two-sessions per-week for six-weeks. The inclusion criteria were broad and one participant showed treatment related changes. Recruiting from the NHS was slow and inefficient.

Since then, i have developed music protocols, delivering them on acute, subacute and community setting, and made several failed attempts to run other trials, apllying for Dunhill Trust funding and NIHR Research for Patient Benefit, plus a charity grant. Then, there were the Innovate UK and MCR grant applications to build an app for UL rehab using touchscreen instruments.

In 2023, I started another home-based trial, aiming for five participants, again recruiting from NHS community services. We recruited four and this time they completed 15 sessions in three-weeks. It took about 18 months to recruit these four and in addition another seven had been referred who didn’t meet the inclusion criteria. UL data for the first trial seemed accurate, with no inexplicable changes over baseline periods or elsewhere. In the second, there were odd changes in ARAT scores and 9HPT timings. Another point is that the intervention delivery daily over three-weeks created problems, as there were no music therapists available to do this, the process of setting up contracts for sole trader therapists with the university and with the NHS took over a year.This will all be published (I detest academic publishing for the cost, time it takes, rip-off process that requires reviewers to work for free, and general exploitation of clinicians, researchers and academics. We would be better off making podcasts, documentaries, films, animations).

Since the literature review in 2014 (Physical rehabilitation approaches for the recovery of function and mobility following stroke - PubMed), there has been an update: CD001920.pdf. It’s thorough and densely packed with information that requires unpacking to find the pertinent UL information. It does seem, at a glance, that the heterogeneity of study designs and reporting is unchanged. Based on this, it is easy to assume that all the efforts going into this work is progressing at a snail’s pace towards patient access and benefit. It seems that, even though UL/physio interventions such as Bobath have been deemed less effective than alternative, researchers are still conducting trials – why?

There is a new document with recommendations for UL rehab, which is useful: kwakkel-et-al-2023-motor-rehabilitation-after-stroke-european-stroke-organisation-(eso)-consensus-based-definition-and.pdf

Based on my experience and knowledge (which is behind to a degree and, to be frank, is never going to keep up if I continue to work outside of a team of stroke researchers; I am doing my best to rectify this and develop teams)

·        How is it possible to accurately measure changes in function, when most community stroke teams do not collect UL data and those that do seem to choose their own assessment tools, meaning that there is no uniformity between teams?

·        How reliable are the assessments?

·        What technology could ensure more precise measurements of change – wearable sensors, portable motion capture?

·        What is a true measure of improvement, is it in the affected arm or is it in how much it is used in daily life and who should be asked about this, perhaps it is both?

·        What UL exercises exist that can be delivered in the home and that patients are able to self-deliver?

·        What support is required for self-delivery?

·        Do people maintain the exercises for long enough to see meaningful change for them, or does engagement fizzle out and if so, why?

·        If community stroke teams must collect the UL data, how do they find time when all services are stretched to the limit?

·        What about more severe hemiparesis – are these patients prioritised? What do they get and how does it differ from mild to moderate? Do they receive treatment with the right intensity and for the right duration?

·        If the answers to these questions are all, no, there isn’t enough dosage or support or technology, then what could be done about it and how much would it cost? Is there a quick and easy solution, i.e. expert practitioners in the field know what is needed and a donation from one of thousands of wealthy donors would ensure provision for the entire country, then why aren’t we pursuing this solution?

·        If data management is a barrier, it needn’t be, because there are enough Healthtech companies that have the systems to manage this, and there are methods that ensure patient anonymity is secure. Perhaps the obstacles come from NHS procedures, if so, are they really necessary – yes data protection is paramount, but are there procedures that could be streamlined and allow improved access for patients, including providing them with helpful and encouraging support and progress feedback?

·        Is the problem of too few services, not enough effective and accessible UL rehab plans and stroke survivors being left with hardly any rehab in the community perpetuating because these gaps are only visible to a minority of stroke survivors against a backdrop of prioritising dementia and cancer care and research?

·        Surely it is possible to calculate the savings from improved UL services, from reduced social care costs as well as NHS costs – here is the latest calculation of £43 Billion annually for Acquired Brain Injury: the_cost_of_acquired_brain_i.pdf

Concluding thought

Perhaps there is a well-established culture in the world of stroke, that survivors quickly must face up to ‘you won’t get enough, so if you’ve got the wherewithal, pay for your own rehab now and do this for as long as you can, work hard, and you have a better chance.’