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:
And this is the poster which both introduces and shows the pathway, with references.
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! firstname.lastname@example.org. 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)