Time to write again!!!

I was moved to read some of this blog myself today: I will explain why in a moment, but as a result, i think it may be time for some more entries.

First, an update on cleo. She is fine! not much has changed in her physical capabilities since i last blogged, but she continues to adapt well to the very physical limitations her paralysis has placed on her. She moves well enough, albeit a little unsteady at times. The arm remains completely dead, and as such i think we are resigned to the fact, as before, that it will never work again!

So, to get this up to date...here goes.

F.E.S. (Functional electrical stimulation)

Way back last year sometime, James suggested cleo would be a good subject for a treatment called Functional Electrical Stimulation. FES is a way to help the muscles in the leg to work, using electrical stimulation, provided through a small box of tricks worn by the patient, and controlled by a footswitch that fits in the heel of the shoe. In essence what FES does is enable the foot to be elctrically stimulated to create both eversion and dorsiflexion (outward and upward movement of the foot from the ankle as you walk, stopping the foot from dragging on the floor).

So, James did the referral and after a short time (several weeks) the local PCT approved the funding and we were referred to the National FES Centre at Salisbury in Wiltshire for an intial consultation.

Now it's 180 odd miles from us to Salisbury but if it helps cleo's walking its worth it, of course. So, off we toddle to Salisbury, and after a meeting with one of their clinicians, the go ahead was given.

This meant a further 2 day trip to Salisbury to get the first fitting and set up of the FES for cleo, and she now has her FES unit. At first it was very frustrating as the whole thing depends upon exact placing of electrodes on the leg and we spent much time struggling to find the right positioning, so that we achieved the correct foor movement as cleo walked. A few months on now and we have found that we are much better at getting the thing to work, and above all it creates a much more stable foot placement for cleo when she walks. She doesn't walk much faster than before, but what she does have is much more confidence, knowing that her foot will land flat and stable, thus avoiding the possibility of her ankle giving way by rolling over, and the actual effort involved in the walking is far less, enabling her to go further, and with more confidence in her ability to do so.

Having had the initial fitting of the FES and last week returned to Salisbury for the 3 month review they are very happy with how cleo is doing with it, and we return there in 6 months for a further check on progress.

Finger pointing....

As I have often said in here, cleo does have those "Why Me?" days. Although far less now than at the beginning I think they are a fact of life that we (and certainly cleo) has to deal with.

Now a few months ago, cleo had cause to go to the doctor about something entirely separate from the stroke. She went on her own, because of course she drives now, and she likes to be as independent as possible. So, arriving at the surgery she was seen by her own GP (rather an unusual event these days as its very much pot luck there as to who you are seen by) who, on her entrance into the consulting room remarked something along the lines: " I suppose the blame for how you are now lies squarely on my shoulders..."

Needless to say cleo was dumbfounded by this statement. When she got home she told me, and we both immediately thought the same thing: negligence, compensation, solicitors, complaint....and so on. Having said that we thought it, neither of us voiced that thought immediately but it kep nagging away at me that day and the next, until I decided to discuss it with cleo. Surprise surprise she had been having the same thoughts!

So we started to research a little. The first step of any formal claim etc is to make a complaint in writing to the GP direct, and so, over the next couple of days we drafted a letter of complaint outlining our belief that cleo may well have been given less than adequate treatment/health management, the result of which may well have been the stroke. Several letters followed as well as a meeting with the practice manager and GP, culminating in less than convincing answers.

We then decided to pursue the matter further, and have consulted a solicitor who specialises in clinical negligence. Today we met the solicitor for the first time and she feels there is very possibly a case to answer. Now in English law these matters are time limited in that once an event (or knowledge) occurs you effectively have 3 years to start the process of a claim. cleo hadd her stroke on November 21st 2005, so we have little time to get our proceedings issued(less than 3 months) but we are going to go ahead with it, and lets see where we go from here!

Having met our solicitor today I have high hopes that we have found the right person to help us and that ultimately something will come from this, although we do not expect it to be quick or easy: still, who said we can't deal with tough situations?