Barts-MS rose-tinted-odometer: ★★★★★
I have many patients with MS who have unrealistic expectations of what we can do for them and/or what our MS service has to offer. For example, I may get asked why we don’t have or own counsellors to offer bespoke cognitive behavioural therapy (CBT) or own physiotherapists for fatigue management, exercise instruction or falls prevention. Another is why can’t I see your continence service. The reason why we don’t have these services on tap is based on how NHS services are configured and resourced.
Expensive DMTs are funded centrally by NHS England and other services locally by so-called clinical commissioning groups or CCGs, which cover the local population. CCGs have a mandate to offer these services to all people who need them, not just pwMS. Our local commissioners or CCGs cover three London boroughs Whitechapel, Hackney and Newham. Therefore only patients who live in one of these boroughs we can potentially access our ancillary services if they have been commissioned by these three CCGs at our hospital. If you attend our service and don’t live in these boroughs then you need to be referred locally to access these services close to where you live.
This creates a problem for our service because more than two-thirds of our patients with MS are out-of-area, i.e. they don’t live in one of our three home boroughs. This makes it very difficult for our team to coordinate their care and hence have we have to rely on a local MS nurse if there is one, or the GP to plug patients into the local services. Inevitably there are delays and our patients get very frustrated.
Another issue is social services (personal independence payments or PIP, housing, housing adaptions, etc.), which are at present not part of the NHS’ remit, is also paid for and provided locally. This is why if you have MS you need to #ThinkLocal.
Therefore, if you have MS you need to find out about your local services and ask ‘what can I do to help myself make the most of the local services’ and to manage your expectations of what the NHS has to offer centrally at your Neuroscience Centre. This is why as part of our MS Academy Raising the Bar initiative we have a workstream that is about upskilling people with MS to do just this. The aim of our proposed patient programme is to provide a generic course to teach pwMS on how to navigate the NHS and understand how services are configured. As part of this course, we hope to teach pwMS the basics of self-monitoring and self-management.
Sticking to this theme I loved this qualitative research paper below on empowering people with advanced MS to use a standing frame at home. The outcome was based on four themes, which the more abled of us take for granted. Does using a standing frame make you “feel like the old me”, do you “notice a difference”, do you “want to do it right” or “ have you had a good day or a bad day”.
Not surprisingly simply being able to stand, even if supported by a standing frame, helped people with late-stage MS feel more like their old selves and provided a sense of normality and enjoyment. PwMS noticed improvements in physical and psychological symptoms, which were often associated with increased participation in activities they valued.
Please note these types of services are the remit of a local physiotherapist and not the MS Team and based on this and other research should be an essential service of pwMS. The question I ask is how many people with advanced MS in the UK don’t have access to a local physiotherapy service and hence are not able to be provided with a standing frame and be taught how to use it safely and effectively? Is this something that can be self-taught? Do you need a bespoke standing frame or could you make your own standing frame or simply use home furniture instead?
Picture from How to Build your Own Standing Frame for Paraplegics
A quick search on Google using the search terms ‘DIY’, ‘standing frame’ and ‘multiple sclerosis’ or ‘paraplegia’ shows you how innovative people really are. Have any of you designed and made your own standing frames? If you have you may want to send us a picture or video of your creation so that we can share them with the community. I found this video very inspiring.
Dennett et al. “I’m in a very good frame of mind”: a qualitative exploration of the experience of standing frame use in people with progressive multiple sclerosis. BMJ Open 2020 Oct 28;10(10):e037680. doi: 10.1136/bmjopen-2020-037680.
Objectives: The study aim was to explore the experiences of people with progressive multiple sclerosis (MS) and their standing assistants during their participation in Standing Up in Multiple Sclerosis, a randomised controlled trial (RCT) of a home-based, self-managed standing frame programme.
Design: A qualitative approach, using audio diary methodology was used to collect data contemporaneously. Diary data were transcribed verbatim and analysed using thematic analysis.
Setting: Participants were recruited from eight healthcare organisations in two regions of the UK. The intervention was home-based.
Participants: As part of the RCT, 140 participants were randomly allocated to either usual care or usual care plus a standing frame programme. Using a sampling matrix 12 people with progressive MS (6 female, aged 35-71 years, Expanded Disability Status Scale 6.5-8.0) and 8 standing assistants (4 female) kept audio diaries of their experiences.
Intervention: The standing frame programme involved two face-to-face home-based physiotherapy sessions to set up the standing frame programme, supplemented by educational material designed to optimise self-efficacy. Participants were encouraged to stand for at least 30 min, three times a week for the 36-week study period.
Results: Four main themes were identified: “Feeling like the old me”; ‘Noticing a difference’; “I want to do it right” and “You have a good day, you have a bad day”.
Conclusions: Supported standing helped people with progressive MS feel more like their old selves and provided a sense of normality and enjoyment. People noticed improvements in physical and psychological symptoms, which were often associated with increased participation in activities they valued. Provision of support from a physiotherapist and recognition of the variable nature of the condition were highlighted as factors to consider when establishing a standing programme.
CoI: multiple
Twitter: @gavinGiovannoni Medium: @gavin_24211