Experiences of attendance at a neuromuscular centre: perceptions of adults with neuromuscular disorders

Abstract

Attendance at this voluntary sector Neuromuscular Centre provided physical, psychosocial and economic benefits. The Neuromuscular Centre through its holistic approach offers a unique model for rehabilitation of adults with neuromuscular disorders. As an enterprise, satellite centres adopting the ethos of the Centre could be created, which could potentially help to redress the inequalities in health care for adults with neuromuscular disorders.

The use of an online support group for neuromuscular disorders: a thematic analysis of message postings

“…Similarly, those with muscular dystrophy taking part in an exercise intervention also cited contact with other people with similar conditions as one of the main benefits of participation [25]. These results are also consistent with the findings of a study which evaluated participants' experiences of attending a specialist neuromuscular centre [26]. Members valued the opportunity to meet others socially, develop their knowledge from meeting others with the condition and learn from others about ways of coping.…”

It’s more than just physical therapy: reported utilization of physiotherapy services for adults with neuromuscular disorders attending a specialist centre

“…Variability in access to physical therapy has been identified for people with NMD in the UK [7,16]. This study confirms previous findings that some people with NMD have to travel large distances to gain access to specialized treatment [5].…”

“…This seemed to provide participants with encouragement and more self-assurance about their situation. It has been found that engaging with people in similar circumstances is more likely to provide an environment where individuals are more compassionate and supportive of each other [16]. Whether it is having a similar physical condition that is important or a comparable life situation is not clear.…”

“…Whilst it has been argued that a course of 6 to 8 weeks of physiotherapy was appropriate for people with NMD [3], this fails to consider the user's perception of their needs and the variability of symptoms inherent to NMD. Access to specialist physiotherapy has been highlighted as one of the main perceived benefits of attendance at the NMC [16]. However, there has not been any formal evaluation of this service nor its utilization by adults with NMD.…”

“…However, access to physiotherapy appears restricted for adults with NMD, with some individuals unable to receive input from physiotherapists who have expertize of their condition, or gain regular ongoing treatment to manage their situation [7,16,17]. The Neuromuscular Centre (NMC) is a voluntary sector rehabilitation centre which provides specialist and holistic care for people with NMD in North West England and Wales.…”