Editor – The otherwise excellent review by Wood-Allum and Shaw (Clin Med June 2010, pp 252–8) made no mention of the role of the Motor Neurone Disease (MND) Association which supports patients, carers and professionals alike.1 In some areas the MND Association has professional support workers who can work closely with the multidisciplinary team. This team may be supported by a consultant in rehabilitation medicine.
The authors recognised the importance of the multidisciplinary team but did not discuss the benefits such teams provide in ameliorating symptoms, particularly in the distressing later stages. Provision of assistive technology can have dramatic effects, eg electrically operated beds, wheelchairs (which can be powered) and environmental control units (ECUs).
Electrically-controlled beds facilitate: control of dependent oedema, transferring in/out of bed and management of limb pain which may/not be related to spasticity. In the later stages of MND the control knob may need to be fixed close to the patient's hand, or be operated by an ECU.2 Carers benefit when patients’ can themselves control body posture in bed and thus do not need to call for assistance when patient's want to change position. Not all beds can be operated by ECUs and specialist advice is needed to know which can.
Powered wheelchairs are valuable in overcoming problematic immobility for users3–6 and assist their carers.3,7 They have been available for indoor/outdoor use in the UK since 1996.8 With sufficient technical support, these chairs can be controlled with integrated systems to enable communication, ECU and powered wheelchair to be controlled by a suitably sited control system.9 EPIOCs can also have recline functions to facilitate swallowing and breathing from the optimal seated position. Additional tilt functions prevent sliding forward in the chair and facilitate pain and pressure management.10 The mobile arm supports mentioned in the article can be fitted to either manual or powered wheelchairs.
ECUs have long been recognised as bringing benefits to those with progressive weakness which use about 20% of the ECUs provided in the UK. They facilitate independent operation of electrically operated devices, eg radios, heaters, lights, etc.
Assistive technology should be considered for those with progressive neurological weakness.
References
- 1.MND Association What does the MND Association do? Northampton: MND Association, 2010. [Google Scholar]
- 2.Paul SN, Frank AO, Hanspal RS, Groves R. Exploring environmental control unit use in the age group 10–20 years. Int J Ther Rehabil 2006; 13:511–6. [Google Scholar]
- 3.Frank AO, Ward JH, Orwell NJ, McCullagh C, Belcher M. Introduction of the new NHS Electric Powered Indoor/outdoor Chair (EPIOC) service: benefits, risks and implications for prescribers. Clin Rehabil 2000; 14:665–73. [DOI] [PubMed] [Google Scholar]
- 4.Evans S, Frank A, Neophytou C, De Souza LH. Older adults’ use of, and satisfaction with, electric powered indoor /outdoor wheelchairs. Age Ageing 2007;36:431–5. [DOI] [PubMed] [Google Scholar]
- 5.Davies A, De Souza LH, Frank AO. Changes in the quality of life in severely disabled people following provision of powered indoor/outdoor chairs. Disabil Rehabil 2003; 25:286–90. [DOI] [PubMed] [Google Scholar]
- 6.May M, Rugg S. Electrically powered indoor/outdoor wheelchairs: recipients views of their effects on occupational performance and quality of life. Br J Occup Ther 2010; 73:2–12. [Google Scholar]
- 7.Frank AO, Neophytou C, Frank J, De Souza LH. Electric Powered Indoor/outdoor Wheelchairs (EPIOCs): users views of influence on family, friends and carers. Disabil Rehabil (2010). [DOI] [PubMed]
- 8.Department of Health Powered indoor/outdoor wheelchairs for severely disabled people. London: DH, 1996. [Google Scholar]
- 9.Williams E. Electronic assistive technology: a working party report of the British Society of Rehabilitation Medicine. London: British Society of Rehabilitation Medicine, 2000:1–34. [Google Scholar]
- 10.Richardson M, Frank AO. Electric powered wheelchairs for those with muscular dystrophy: problems of posture, pain and deformity. Disabil Rehabil Assistive Technol 2009;4:181–8. 10.1080/17483100802543114 [DOI] [PubMed] [Google Scholar]