Functional Electrical Stimulation
Martin’s story of how his wife bravely battled the effects of a Stroke for 11 years.
“Elaine was a PhysioFunction 'demo patient' for a health professional’s education day… I believe her life would have been much longer, had she had Functional Electrical Stimulation (FES) much earlier, rather than 11 years on from her stroke… I can see how much difference it can make to their lives, and arguably save NHS resources in the long term by maintaining better health and quality of life.”
Elaine barely survived a very serious brain haemorrhage and stroke in 2000 which left her virtually paralysed on her right side and severe cognitive problems. Her hospital case notes were marked 'do not resuscitate', which one son had noticed and argued with the consultant about to no avail but he did not want to worry the rest of the family so I only found out about after her death.
She lost her speech for 3 months and when it did come back she was very confused.
She spent 6 1/2 months in hospital during which time the ward sister was concerned that she was becoming institutionalised and so we were both keen to get her home;
She was still very confused and disabled when discharged home. She was also doubly incontinent but being in the home environment and cared for by me with home care support rapidly stimulated her to control her bowel early on.
After about 6 months she was issued with an electric wheelchair but had no concept how to use it. I used to transfer her from her easy chair into it and then drive it around to the kitchen for her meals or to the toilet. Eventually she learned how to use it and it gave her considerable independence compared to how she had been.
Unfortunately Elaine then became very attached to the electric wheelchair and was resistant to learning to toilet herself, transferring into an easy chair to relax and straighten her back, and to learning to walk.
From about the 2nd year of Elaine's stroke I did start to feel that we were not always on the same side, as she was resistant to doing more for herself and could be quite argumentative. I remember having a 1:1 meeting with her consultant neuropsychologist during which he told me that the nature of her cognitive condition meant that it was virtually impossible to get her do anything that she did not want to do and so I would have to learn to accommodate myself to the way she was as it was virtually impossible to get her to change. The one ray of hope he offered was an incentives approach but it felt at the time I had virtually nothing left to give by way of an incentive.
In 2005 I had an Achilles tendon reconstruction operation, which meant that I would be on crutches for 3 months and unable to care for Elaine, so it appeared that the only option would be to put Elaine into residential care for 3 months. This horrified Elaine and so she learned to take herself to the toilet, which I think was an illustration of the incentive approach working!
About 2006, I pressed the NHS for support in getting Elaine walking again. She had 6 sessions of physiotherapy and during that time she walked out of one side of the cottage hospital and around the outside and back in from the other side. However it took more effort than she wanted to put in and she never did it again.
Sometime around 2010 the home carer who bathed her became concerned that she was unstable and so social services provided two carers to bath her from then on. Initially Elaine hated that but grew to love having the attention of two people and looked forward to it. The social services OT visited and confirmed Elaine needed two carers. I was disappointed that was all she did, as I felt she should be identifying appropriate remedial action to restore Elaine's stability.
Elaine was a PhysioFunction 'demo patient' for a health professionals education day at Coventry in November 2010. During the day FES equipment was tested on Elaine and Professor Ian Swainson assessed her as suitable.
On return home we saw our GP and got him to refer Elaine to our local health board for FES. There was some delay somewhere between the GP and the 'Individual Patient Commissioning Panel' I understand that and I understand it was the first referral for FES for a stroke patient. So it took some time to get approval about June 2011 to the RJ&AH Hospital at Gobowen. This was on the basis that there would be a follow up review to assess its effectiveness and decide whether the health board should resource itself to do so. I don't know whether this ever took place but if so I wasn't involved.
Elaine seemed to like the idea of FES and enjoyed her visits to Gobowen.
However it was difficult to get her to practice using FES, there never seemed to be a right time from Elaine's perspective. We resolved this by having a joint meeting of Elaine and me with her community physiotherapist and neuropsychologist, which concluded with an agreement that she would walk a circuit of the inside of the house at 8 am each morning. This worked well for a long time until I started my MBA degree course at Bangor University in Autumn 2012 and had to leave the house sometimes before 8 am. Unfortunately she could not normally be persuaded to walk earlier, though she used to get up at 6.45 am, nor on my return. So the regularity of practice slipped somewhat in Autumn 2012, but she did get up to 75 yards a day as the number of circuits of the house increased.
Fiona Hinton the local community physiotherapist was a gem. The health board's panel had not budgeted for her time to support Elaine, but she found it and liaised well with Gobowen, including in her own time visiting Gobowen for some of Elaine's appointments. She flagged an important issue, that in Elaine's case her FES suitability assessment should have included her cognitive condition as well as her physiological condition.
Rudi Coetzer, her consultant neuropsychologist also gave excellent committed support.
I saw Elaine as something of a pioneer for FES for strokes in North Wales and had hoped that another stroke patient could be selected to use her FES equipment. I'm pleased that it has been passed on to an MS patient who needed it. However I am hoping that the health board will still offer FES to appropriate stroke patients, as I can see how much difference it can make to their lives, and arguably save NHS resources in the long term by maintaining better health and quality of life.
Elaine died from the inspiration of blood from a duodenal ulcer. A chest scan showed that her hiatus hernia had become so enlarged as to displace her heart and that this together with the pronounced spinal curvature and compressed vertebra had severely restricted her chest cavity. So she was breathing with very limited lung capacity, and was therefore quite vulnerable to any respiratory infection etc. One of the registrars told a son that FES had probably prolonged her life by up to a year.
I believe her life would have been much longer, had she had FES much earlier, rather than 11 years on from her stroke.