Preventing the risks to a person with progressive MS of an acute hospital admission.

A Pathway.

For the past few months, we have been working on a ‘pathway’ to help protect people with progressive MS when they are admitted to hospital with an acute illness ( such as infection) . We know that when people with progressive MS have an unplanned hospital stay ( due to becoming unwell – obviously all problems are not caused by being in hospital ), they often take a step up in disability, and sometimes this can be permanent.

Once someone is in hospital, all kinds of helpful aids and routines, like their own electric wheelchair, intermittent catheters or bowel irrigation can be stripped away, causing problems and complications, but that shouldn’t be the case. Once a person is in bed, they are also at risk of the complications of immobility, such as increased spasticity, pressure areas and constipation.

We based our work on issues and stories that came from people with progressive MS, with a view to helping to improve education and finally, care, and with a final aim to help people get home again as safely, and as quickly as possible.

We have created a ‘pathway’ on one A4 sheet, which can be adapted for use in any locality, to be laminated and kept on the ward, and act as a prompt for the key actions that should be taken when a person with progressive MS is admitted to hospital. If these actions are taken, then the hospital stay itself should not be contributing to any worsening, and should be able to play its therapeutic part.

This is the Pathway:

Pathway for progressive MS in acute admission

And this is the poster which both introduces and shows the pathway, with references.

Progressive MS Poster

Our aim is to introduce this into our local hospital along with some training, to raise awareness for front line staff in the needs of a person with progressive or advanced MS.









Yesterday,  I presented this at the MS Trust annual conference, and it was received very positively by the MS specialists attending; lots came to the poster display to take away a paper copy. It was great to get positive feedback from colleagues, and also from Stuart Nixon MBE, MS ambassador and his wife, who pointed out immediate tweaks we need to make ( like ensuring we consistently use the word Person rather than Patient – good call!)

This pathway has been part of a wider project undertaken by the Beds and Northants MS Therapy Centre, funded by Central Bedfordshire Council, to improve quality of life for people with long term conditions. We are also running 3 hour interactive sessions for both family and professional carers, ‘Caring for the Person with Advanced MS’, which have been very warmly received and positively reviewed. We intend to develop this training for hospital staff, to go along with the launch of the pathway.

This is a work in progress so if you have suggestions for improvement, please get in touch! We also had assistance from Sanofi Genzyme with putting the Pathway into VISIO format, so Thankyou to you guys and hope you like what we’re doing with it!

All the best, Miranda ( Olding)  and Emma (Matthews)






Assistive technology for loss of hand function

The hardest part of being an MS Nurse, for me, (and I know I have Nothing to grumble about!!)  is when someone with advanced MS tells me that  they are losing hand function.

I’ve compiled a list of useful resources to help live life as fully and independently as possible, in this situation. Here’s the list so far, but it’s only a beginning, I’d like a more comprehensive resource so please do contribute the things that you know.

This is where technology is absolutely your friend.

I’m loving this round up of the best assistive tech for 2017 from the makers of TECLA:

They also have useful blogs on choosing smartphones, DIY assistive tech and more; see

1) Abilitynet are an excellent charity that provide information and even home visiting assistance to help people with disabilities get the most from their computer, tablet and smartphone, including using voice controls.

The home visit service:


2) Environmental controls/Assistive technology (AT)

(AT) is any item, piece of equipment, software program, or product system that is used to increase, maintain, or improve the functional capabilities of persons with disabilities. Put simply, it allows you to control things around you – from doors and curtains to TV, phone, wheelchair and more, without the normal use of your hands.

Counties will vary, but in Bedfordshire, if only one item is requested, the community OT department sort it, but for more than one, you can request a referral to the Acquired Brain Injury (ABI) team, for a specialist assessment.

3) Another place you can learn about AT is which has impartial advice and information  about daily living equipment, developed by the Disabled Living Foundation (DLF)Their AT advice is here:


Sometimes, what you need, is absolutely bespoke to you. When that’s the case, the wonderful experts are the charity


4) Remap  Remap are

retired engineers work with disabled people to try to make things to solve their individual problems; my experience of them has been fantastic.

Photo courtesy of Remap.


5) Independent electric wheelchair control can still be possible for people who have completely lost hand function, using ‘sip and puff’ / ‘suck and blow’ , or ‘tongue drive technology. Discuss with wheelchair services. You can see an example of it here, but it’s just an example, I don’t particularly recommend or endorse it.

6) Suck and blow/sip and puff technology can also be used to use a computer, turn pages, or other commands.

7) Neater eater

This is a lovely piece of kit that has been around for a long time; like a robotic arm that can help people with limited hand function to eat independently; i also see that they have systems for drinking too.

I have many patients who continue to lead rich, full and busy lives, even with minimal function and maximum disability, and that, I guess, is the power of the human spirit.

Emma ( my colleague and the other MS Nurse at the MS Therapy centre) has just recently been at ECTRIMS in Paris, and we are both going to be at the MS Trust Annual conference next week, so hope to report back soon,

All the very best!  Miranda

human spirit