I was lucky enough to be offered a bursary place by the Posture & Mobility Group committee to attend the 2023 conference which I gratefully accepted. A couple of months have passed since attending the event in Telford and, working as a clinical lead for an NHS wheelchair service, I continue to see the impact of my learning there on patient care; from new equipment, different ways of thinking about a patient's care journey, and networking opportunities.
I want to particularly take this time to reflect on a plenary session by Nick Emery (pictured at work in the Robert Jones & Agnes Hunt Orthopaedic Hospital, Oswestry). This talk regarded the overview, treatments and management of Spinal Muscular Atrophy and Duchenne Muscular Dystrophy (DMD).
DMD is a life limiting condition affecting boys, and is genetically inherited from their mother. The condition causes a lack of dystrophin development, and dystrophic muscles cannot be stretched, impacting mobility initially, then posture in the later stages of the condition.
Nick highlighted the drive for DMD children to be encouraged to walk for longer than is functional, possibly driven by the parents’ desire. It is interesting that in the classification and treatment of DMD, being able to take 4-5 steps is classed as ‘walking’. Although the fatigue, increased fracture risk, and pain implications of this mobility can be costly, the alternative of being a wheelchair user can be terrifying for both the patient and their family.
The talk made me reflect on a young man with DMD who I have known for many years. Originally as an occasional wheelchair user, but now as a full-time powered wheelchair user with a custom foam carve seat. Some of the key points that resonated most with this case are the psychological impact on the relationship between parent and son, the rapid change and desire to maintain function in the condition, and the benefits of equipment in maintaining function. The following considers these thoughts in relation to the case.
Relationship between parent and son: Being an occupational therapist by profession, and having earlier in the day found the Psychology input in a wheelchair service talk by clinicians at Homerton University Hospital incredibly interesting, I was particularly drawn to Nick’s discussion around the psychological implications of DMD. The relationship between relatives and the patient requires delicate handling, particularly between son and mother. There are layers to this relationship as a care giver and the carrier of the gene that produced the DMD. In this case a complex family situation has impacted how familiar bonds and relationships were formed. It can be challenging for the patient to acknowledge any decline in his condition, not just as a decline, but a decline at the hands of a condition given by his mother.
After several failed seating alterations, I recognised the common theme of the patient reporting comfort, then, at a future appointment, feeling the opposite. It occurred to me that this may have been because of difficulty with speaking openly about the seating at the time. To counteract this, I have taken to sitting the patient in a seating system, asking for his opinion on comfort and fit, then leaving the room, along with all clinical staff, while the patient and his mother can process the seating without an audience. This intimate moment can be emotional and, inevitably, on returning to the room, there is new feedback about the seating that was not disclosed before. This private processing space appears to have improved the overall experience and fit of the seat. There may be other cases when leaving the patient in the room without their mother would be more appropriate for gleaning a true reflection on the seating by removing some of the guilt element.
Desire to maintain function: Over the years of seeing this young man, it has been increasingly challenging to ‘get it right’ with his seating - it can feel that when an initial assessment is completed, there is often a desire to maintain function that may be unrealistic. We spend the appointment looking at what they can do, and what they need to be able to maintain this. Then, inevitably, the patient returns, and the function that they wanted to maintain has reduced. Sometimes this is caused by service delays in provision, resulting in functional decline associated with the condition. Other times it can feel that the condition causes someone to ‘function on a knife’s edge’. In this scenario, it may feel that initially, the most important element of a new seat is to have more trunk support to allow energy conservation or pain management, but in providing this support the patient’s ability to drive the powered wheelchair safely is reduced, because their wrist is held in a very slightly different position. DMD appears to be one of the most complex conditions to support due to the knock-on effect of making a small change and the patient not having the functional adaptability to alter and adapt around this change.
Benefits of equipment to maintain function: The importance of standing wheelchairs, adapted controls and micro joysticks to support with engagement in the environment was covered in Nick’s talk. Applying this to the case study under current service specifications and restrictions can feel frustrating because the wheelchair service was only able to provide a powered wheelchair with some outdoor capabilities, tilt and recline. This means that however much other functions of a wheelchair may be useful, we are limited by the service specification set out for us. In this case, a standing wheelchair with the amount of lateral support used would require an articulating backrest to maintain the support location. I am also mindful that the patient’s head control has reduced in recent years, and this would need to be considered in any standing provision.
The patient chose to explore the Personal Wheelchair Budget scheme to purchase a powered front wheel drive with tilt, and a seat riser. This additional feature has been very helpful in improving this patient’s engagement, and it could be argued that the benefit of a seat riser would have helped his social needs, but not clinical requirements.
Grayton , L., Solomon, L., Wallis,L., City & Hackney Wheelchair Service. Psychology input in a wheelchair service, PMG Conference 2023.
With thanks to PMG for the bursary place to attend the 2023 conference.