Standing up in multiple sclerosis (SUMS): protocol for a multi-centre randomised controlled trial evaluating the clinical and cost effectiveness of a home-based self-management standing frame programme in people with progressive multiple sclerosis.

BACKGROUND: Multiple sclerosis (MS) is an incurable, unpredictable but typically progressive neurological condition. It is the most common cause of neurological disability in young adults. Within 15 years of diagnosis, approximately 50 % of affected people are unable to walk unaided, and over time an estimated 25 % depend on a wheelchair. Typically, people with such limited mobility are excluded from clinical trials. Severely impaired people with MS spend much of their day sitting, often with limited ability to change position. In response, secondary complications can occur including: muscle wasting, pain, reduced skin integrity, spasms, limb stiffness, constipation, and associated psychosocial problems such as depression and lowered self-esteem. Effective self-management strategies, which can be implemented relatively easily and cheaply within people's homes, are needed to improve or maintain mobility and reduce sedentary behaviour. However this is challenging, particularly in the latter stages of disease. Regular supported standing using standing frames is one potential option. METHODS/DESIGN: SUMS is a pragmatic multi-centre randomised controlled trial evaluating use of Oswestry standing frames with blinded outcome assessment and full economic evaluation. Participants will be randomly allocated (1:1) to either a home-based, self-management standing programme (with advice and support) along with their usual care or to usual care alone. Those in the intervention group will be asked to stand for a minimum of 30 min three times weekly over 20 weeks. Each participant will be followed-up at 20 and 36 weeks post baseline. The primary clinical outcome is motor function, assessed using the Amended Motor Club Assessment. The primary economic endpoint is quality-adjusted life years. The secondary outcomes include measures of explanatory physical impairments, key clinical outcomes, and health-related quality of life. An embedded qualitative component will explore participant's and carer's experiences of the standing programme. DISCUSSION: This is the first large scale multi-centre trial to assess the clinical and cost effectiveness of a home based standing frame programme for people who are severely impaired by MS. If demonstrated to be effective and cost-effective, we will use this evidence to develop recommendations for a health service delivery model which could be implemented across the United Kingdom. TRIAL REGISTRATION: ISRCTN69614598 DATE OF REGISTRATION: 3.2.16 (retrospectively registered).

Is there a standard procedure for assessing and providing assistive devices for people with neuro-disabling conditions in United Kingdom? A nation-wide survey.

BACKGROUND: Assistive devices are currently provided to people with neuro-disabling conditions to promote or maintain independence in activities of daily living. However, it is unclear whether assessment procedures performed by health care professionals to guide the provision of assistive devices are standardized. OBJECTIVE: To explore the assessment and service-delivery processes of assistive devices for people with multiple sclerosis, cerebrovascular disease and Parkinson's disease experiencing physical disability by health care professionals in the United Kingdom. METHODS: A survey was conducted among UK health care professionals working with people with neuro-disabling conditions. Descriptive and content analyses were used to code survey data. RESULTS: In total, 231 health care professionals completed the survey: 93 occupational therapists, 136 physiotherapists and 2 assistant practitioners. Less than half of the respondents (46%) reported use of local, national, or combined guidelines when assessing a service user's suitability or need for assistive devices. When guidelines were used, they were not consistent and not specifically for assistive devices. The respondents stated that when users were allocated small and portable assistive devices, they were supplied within four weeks. This period increased for large equipment, major home adaptions or if external specialist services and/or funding was needed. CONCLUSIONS: Standardized operating procedures for assistive device provision are not being carried out within the UK. Variable access to assistive devices supplied by the state indicates inequity across regions. Future research should explore potential benefits of developing standardized assessment procedures for the provision of assistive devices and devise methods to reduce current variability in service delivery.

A pilot mixed methods investigation of the use of Oswestry standing frames in the homes of nine people with severe multiple sclerosis.

PURPOSE: People with multiple sclerosis (MS) commonly experience muscle weakness which limits their ability to stand. Supported standing may minimise the secondary complications of prolonged sitting but evidence for this is scarce. This study investigated the effects of regular standing in an Oswestry frame on some secondary complications of immobility and explored the lived experience of standing. METHODS: Nine people with MS participated in a mixed-methods study over 48 weeks. Single-case experiments were used. Outcomes included: Amended Motor Club Assessment, Canadian Occupational Performance Measure, Penn Spasm Scale, bowel frequency and a numerical pain-scale. The qualitative strand used a case-study approach with a phenomenological perspective. RESULTS: Significant improvements (p < 0.05) were demonstrated for individuals in strength, ADL and spasms but not in bowel frequency or pain. Subjective improvements occurred in continence, clonus and fall-rate. Being upright or strengthened by standing enabled participants to re-engage with activities and re-establish themselves within relationship roles. This engendered a sense of achievement and increased optimism. CONCLUSION: This study provides preliminary evidence of the effectiveness of regular frame-standing in improving strength, function, spasms, continence and fall-rate in people with severe MS. Standing reinstated a sense of belonging and optimism by restoring important life-roles and feelings of normality as participants regained previously valued activities. Implications for Rehabilitation Regular standing in an Oswestry frame may improve functional ability in people with severe MS. Regular frame standing may have a positive psychological effect on people with severe MS. Self-management of a standing regime may be feasible.

Swine vesicular disease: continuing serological surveys of pigs presented for slaughter in the United Kingdom.

Following the first serum survey for swine vesicular disease [SVD] in Great Britain in 1974 (Watson and Hedger 1974), three further surveys have been carried out. In these four surveys an overall total of 9760 sera have been examined, involving pigs from 958 premises in the first three surveys and an unknown number of premises in the fourth survey taken on a national basis. Forty-three farms were visited as sources of origin or possible sources of origin of the pigs from which positive or inconclusive results were obtained. Subsequent to the one clinical case of disease already reported with the results of the first survey, no further clinical cases of SVD have been confirmed, although lesions suggestive of the disease were found in some pigs on four of the premises visited. SVD quarantine restrictions on these four farms were removed subsequent to further serological sampling and when there was no indication that a spreading vesicular condition existed.