My complaint to University Hospitals of Leicester NHS Trust resulted in an MS Nurse visiting us last week.
Here is how I imagined MS Nursing would work:
The MS Nurse would be the central point of contact. They would have deep knowledge of the person’s diagnosis and current condition. They would be the person to contact other services – GP, Physiotherapy, Occupational Therapy, Social Services, District Nurses to name a few – and would furnish those services with not just a request for help but the ‘why’ along with other relevant information. The MS Nurse would be there to provide Support for the person with MS and to identify Support needs and refer as needed for other family members.
This is how MS Nursing in Leicester actually works:
“Let us know what happens”.
They cannot refer people. The political ‘why’ of that doesn’t matter. Well it does but for practical purposes it does not.
So it makes the MS Nurse role pointless.
Am I thinking the MS Nurse should do too much? No. I base what I think on my own nursing career (1985-2002) and my wife’s (1986-2003). What we expected is what really should be delivered but no, not happening.
The MS Nurse offered no practical help at all. Why? I really have no idea. Their next visit? November 2015.
Me? I have written off the MS Nurses totally.
There is no care for people with Multiple Sclerosis in Leicester / Leicestershire.