Creativity: DIY Standing Frames

C

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?

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

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

19 comments

  • There’s the amazing charity Remap, they make custom made disability equipment for people. It’s a free service run by volunteers.

    I wonder if they could help out with a standing frame.

  • Thanks for this post, now I finally understand how the logic behind local referrals and I am definitely going to advise standing frames to people!

  • So then the MS service at Barts and other hospitals is just get people on DMTs and if you don’t have an MS nurse locally, you’re basically screwed in the other aspects the condition effects you?

    • True, but that’s a whole lot better than having the local less-than-satisfactory neurological team do the prescribing. We’re in a better position to challenge things locally because we know what should be happening. The gulf between a specialist service and a generalised one is (certainly in my local area) enormous.

    • May be but pwMS can find local help via their local MS Society, treatment centres etc. I think about the MS issues I have and they might not actually be caused by the MS, such as UTI’s. So that makes me think do I really need a local MS nurse? I’ve not had to for some years and if I did could a remote MS nurse (telephone appointments only) be sufficient?

      I noticed when I was taking Tecfidera the drug company offered a free nurse telephone appointment service funded by the drug company. The nurses are are not MS specific but could help with Tecfidera related queries and concerns.

    • Our service is more than just DMTs. We provide diagnostic and symptom management service, but the latter needs to be done in collaboration with the GP and local services. For example, if we think someone with MS, who is out of the area, has sleep apnoea that is contributing to their fatigue we would have to ask the GP to refer them to the local sleep lab for testing.

      What we do very well is coordinate the care of our patients with MS.

      • Prof G, on the subject of sleep apnoea and MS, the new once a day tablet for sleep apnoea, (currently in the news), code-named AD109, is made up of two medications – atomoxetine and oxybutynin, could this be trialed for pwMS?

        Oxybutynin, which is usually prescribed as a urinary incontinence treatment and works by limiting spasms in muscles that control the bladder.

        For those with OSA, apparently oxybutynin could act in a similar way on the muscles controlling the tongue to hold it in place, rather than allowing it to block the throat and cause snoring.
        Could this also be trialed for pwMS?

  • I used a standing frame at my local UK MS Therapy centre and I must admit I burst into tears. I’m not prone to tears, but the sense of being my old self, able to stand tall an straight was overwhelming. The strapping is the vital feature, even if you can stand with a normal rollator or frame a standing frame supports you and allows you to stand tall and straight.

  • Beware: alternative view

    “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.”

    Bo**ocks. Would you Prof G, marathon runner, international lecturer, really feel so thrilled by propping yourself up against some off cuts of scaffolding and a piece of MDF? If research had done it’s job 20 years ago we would have neuroprotective agents and therapies to address the real MS – which would have negated the need for DIY standing frames etc. What next in the series? Build an electric wheelchair out of meccano and an old 12v battery, or create your own commode from some Lego and a WW2 tin helmet. Thank god for Dignitas.

    • Sid, I understand your frustration, but you shouldn’t shoot the messenger. All I am doing is reporting a study on the value of using a standing frame in people with late-stage MS.

    • I look after a large number of people with late-stage MS who have a very good quality of life and for them, Dignitas would be a no-no. It is interesting that when people become disabled they often recalibrate their worldview and expectations and often retrain and focus on alternative things in life. This is why the quality of life or as the economists call it utility doesn’t fall very much at all between EDSS 3.0 and 6.5.

      • I’m not shooting the messenger. I am presenting another view. What neuros / GPs / MS nurses do is make life less uncomfortable for those with Advanced MS. This is not the same as a “very good quality of life” (in my view). Most MSers had good health before MS appeared – in their late 20s, 30s… They will remember what it was like to run, walk quickly, ramble through a wood, dance….. advanced MS takes these pleasures and freedoms away (+ there is a long list of other losses which you have mentioned before – job, relationships, independence, dignity…). I know that Advanced MSers take pleasure in the small things – the smell of a Rose, the sound of a Blackbird in the morning. This is because they have no choice. Not one Advanced MSer would swap their Advanced MS life with their previous healthy life. The honest assessment of how bad MS is at the end should be the driver of real breakthroughs in treatments to change lives. The “life’s not too bad for Advanced MSers, they seem to be happy in their little world” view perhaps has contributed to the failure to address progressive MS. Cancer therapies have come on leaps and bounds because “cancer kills”. PS thank you for your work on the real MS, which I think will be a real game changer.

        • “PS thank you for your work on the real MS, which I think will be a real game changer.”

          Take Care when drinking the “real MS” Kool Aid..
          This was Raltegravir flavored courtesy of Merck

          https://clinicaltrials.gov/ct2/show/NCT01767701

          Responsible Party: Gavin Giovannoni, Professor Gavin Giovannoni, Chair of Neurology, Queen Mary University of London
          ClinicalTrials.gov Identifier: NCT01767701

          First Posted: January 14, 2013
          Results First Posted: May 30, 2017

      • Honestly..you are so off..and the scary thing is you are a clinician..researcher..pharma advisor..to Atara and Aslan..who should know way better…edss 3.0-6.5 is minimal to moderate disability so of course they are not going Dignitas.

  • Is the standing frame really just a symbol of control? MS steals control away. What is wrong with Someone choosing to use the standing frame to be more independent? Wasn’t that the objective of the study? It’s a choice; use the frame or don’t. But Don’t misunderstand, I fully agree with Sid that this standing frame solution is far from ideal and it isn’t going to make me feel like the “old me”. The old me backpacked alone in the mountains of a foreign country, loved multiday road trips, and to ski a bit too fast for skill level. “Old me” is a fleeting concept of a person I no longer resemble. I stopped comparisons. I feel that I took control of my identity back by saying goodbye to “old me”, and redefining my post MS diagnosis self As the “new me”. Perhaps health care providers need to change their vernacular when describing adaptive tools and activities as helping MSers feeling like the “old me”. We all know why we call it “the old me” . It’s a former identity. Since MS requires that we recalibrate our world view to be content, I suggest we all ditch “the old me” reference.

  • Ms and standing frames were in the news some months back as the University of Plymouth conducted a study into this very issue

    I never saw it mentioned on this blog.

    https://www.plymouth.ac.uk/research/sums

    As a wheelchair user with MS I purchased my own standing frame. Yes it does provide a sense of of achievement to stand again but it also helps with both bowel and bladder issues along with spasms and improves bone density

    My advice is the following

    Contact your local neuro physio rehab department. Most Council areas have one.

    Contact your local adult social services who can put you in touch with an occupational therapist who can provide advice.

    Be careful making your own. The support slings need to be very sturdy and and you should have them serviced regularly.

    People with MS may also need an electric hoist which can be added to most purchased standing frames.

    Do your research. There are various standing frames which can be purchased at a variety of costs.

    All standing frame manufacturers will offer a trial some will even lend you the frame for a few weeks before you decide to purchase but you should really involve a local neuro physiotherapist. Plymouth University used an Oswestry standing frame which while one of the cheaper ones
    to buy do not offer a suitable trial in my opinion.
    Another option is to source local MS centres or neuro physiotherapy centres which often have standing frames to use and obviously trial.
    Don’t be afraid to phone such centres and ask their advice about frames.

    While pricey here are a couple of options. I purchased from standwell care in the first link.

    https://www.standwellcare.co.uk/

    https://www.medicotech.co.uk/standing.html

    There are means-tested budgets available from the MS Society which could be used to purchase a standing frame. Some local Council physio departments may even deem you in need of such a frame and possibly supply you with one.

    As with everything I did a lot of research myself but standing frames are definitely something worth pursuing

By Prof G

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