So Elfin lady neurologist (she didn’t introduce herself so I don’t know her name although given the names on the board at the entrance to the Clinic I could make an educated guess. What I do know is she is streaks ahead of the European Dr Wolf (not his real name of course but the intellectual (Latin enabled) ones amongst who be able to deduce his name as it is a translation of this wild dog related species).
Elfin is accompanied by ‘my’ specialist MS nurse; file cribbed knowledgeable about my case she may be as I’ve seen her maybe 5 times tops in 7 years. You could say we’re not close; last time she returned my call she said ‘so how are things’ – pause for a milli-second – ‘ no let me answer that, it must be bad because you never phone me! That would be because I don’t know what i could ask for as every time my symptoms reach warp level 3 and above I’m referred out of the team.
Elfin starts by asking if I’ve lost faith in the Clinic – apropos of my saying I had no expectations out of this appointment – I say ‘if I ever had every I had now’. I’ve come to the RAC as I have realised thus far I’ve ignored changes in my condition with the result that I’m never going to trigger the threshold for treatments that are periodically available. These are the ‘miracle cures’ featured regularly in the tabloid press; man walks for the first time in a decade after receiving beta interferon etc
Then the neurologist tells me, in her opinion, my symptoms relate to the pain not the MS i.e. the nerves are not inflamed. The only conclusive way to confirm this diagnosis is to have an MRI scan; which someone with a spinal core stimulator (otherwise known as a Bionics Woman (me included)) cannot have. Oh the delights of having ‘an implanted device’ that is currently inoperable are small in number. One time I was going to a meeting in the Welsh Government building where airport style security systems are in place and I am unable to go through the normal scanning procedure. To alert his colleague on the other side of the barrier the security guard shouted ‘lady with an implanted device coming through!’. All eyes turned towards the mobility impaired woman scrutinising the carpet.
As the diagnosis is that the problems I am experiencing with increased level of general incompetence in terms of poor co-ordination, poor balance, impaired mobility, increased numbness etc, are NOT MS related there is NOTHING the neurologists can do for me; they rely on the Pain Clinic. Unfortunately for me the Pain Consultant has run out of ideas; indeed the recent changes of drugs have come from the GP speaking to drug reps who have come to the Practice selling their wares. My recent foray into Palexia – the first strong non morphine based painkiller came from this route; as it was new and very expensive it has to be prescribed by a hospital Consultant. The Pain Consultant responded positively to a request from the GP to prescribe it for me. His letter says whilst he has no experience of the drug he is happy to prescribe it; when I thank him for doing this he has no recollection of doing this and there is no copy of the letter on file!
After 3 months of persevering with Palexia which frankly wouldn’t have resolved teenage menstrual cramps let alone chronic hardened pain the variety I am encumbered with I happen upon a report in a BMJ (British Medical Journal) blog (free trial subscription on my Kindle). The report examines the case for categorising Palexia; it discusses the experience of patients and report that it is infact now to be recommended for low to medium levels of pain. I enquire how drugs are categorised i.e. how could they get it quite so wrong; I am advised that it is very difficult to carry out trials in sufficient numbers before releasing the drug onto the market.
Whilst I understand the difficulties I wish I hadn’t gritted my teeth for quite so long; during which my use of Fentanyl climbs to the maximum dose (again) and the side effects return with avenge! When you read ‘sleep disturbance’ in the leaflet please be aware that this means HORRENDOUS NIGHTMARES; whatever I had been watching on TV earlier in the evening I would find myself playing a central character as the story is replayed in my dreams. Thank heavens I didn’t succumb to 50 Shades as Wallander was quite creative enough!
The Fentanyl has damaged my teeth badly and tomorrow I will attend my first appointment at the Restorative Dental Clinic at UHW; my friend is driving me in so I don’t have to fight for a nonexistent parking space. I can’t wait to be peered at by students – best make time to tidy the eyebrows; bugger there goes my slightly later alarm call! The referring Dentist told me the Dental Hospital will find my case fascinating; excellent news I thought. Having seen the mummies in the Museum (British?) in London I decided years ago I wanted to be cremated just in case! The question of whether one is a responsible citizen and donates ones body for medical research remains unresolved although I have joined the Organ Donor scheme on the off chance they might find some (odd) bit of me that could be of use to someone in dire straits.
Elfin Lady enquired if I’d ever tried the Fentanyl patches (instead of oral lozenges on sticks); I calmly took a deep breath and said no. Had I (five plus years ago) done so I would probably not be facing the prospect of extensive dental work. The Pain Consultant blanched when I asked if I could try coming of the Fentanyl using the patches – I know its a bit like shutting the stable door after the equine beast has clip clopped down the lane – he hesitated and said it would be very difficult to work out the equivalent dose (lozenges to patches). So I jumped in as he struggled for a coherent answer and said ‘shall we leave things as they are then?’ To which he responded ‘yes that’s probably best’.
So what shall I do with all the time that will be freed up now I am liberated from a round of clinic appointments? It’s not just the direct contact time which is a relatively small percentage of the time, it’s the travel, the walking and the waiting plus the briefing of each consultant/health professional to makes sure they know what the other parties have decided ( too busy to communicate effectively i.e. in a timely manner). My experience of multidisciplinary care is that it is neither multidisciplinary nor terribly caring. Very tiring and frustrating certainly but productive less so.
If I’m honest I do feel a bit like I’ve been cast adrift but the GP has been the most helpful. Ironically he had coincidently spoken to the MS Nurse the day I went to see him this week so he knew what had happened i.e. that I was not eligible for any treatment from Neurology. He had been given a rather polished version of the truth and he said it was interesting to get my perspective! The support of someone I have seen about 3 times in 7 years isn’t exactly something I will miss; she told him she could come to the house and see about things to help i.e. ‘equipment’. I had said it was annoying not to be able to carry a tray – although I have developed a one handed tactic that works without liquids (tuck under bosom (with the aid of age assisted gravity the breast actual assists with support/jamming the tray under my left arm)! Carrying a parcel (containing my father’s shoes) to the Post Office whilst using 2 crutches this morning was a rather more painful procedure! Dad you owe me and I don’t mean the £6.70 postage!
The Nurse said I could have a trolley – a trolley oh lord I was thrown into the middle of a Mrs Overall (Victoria Wood) sketch! The problem with equipment is that its all designed for the elderly person of small stature ; their weight is my mid thigh! Oh and she didn’t mention to the doctor that as we are in the Vale, where the wait is a very long one (3.5 years for my parking space), none of the Occupational Therapist’s recommendations would be a short term solution! I’d be better off setting the Cardiff Metropolitan University Product Design students a challenge to get their teeth into – except the Welsh Government has instructed them to wind up by 2015/16! Who was it who said we’re all in it together? Oh yes some upper class twit with a trust fund – that would the same ones to whom, via the wisdom of the democratic process, the running of the country was gifted!
On a more serious note apropos the recent decision regarding the late Tony Nicklen case and the current Atos review of Disability Living Allowance cases, I wonder where our humanity, as a society, has gone. With a daily increasing level of disability I find myself facing an ever increasingly frustrating life; incrementally the messages from my brain to the various parts of my body are breaking up. The reception is ever poorer as the signal becomes more fragmented. Frankly it doesn’t make any difference to me why my body doesn’t work: whether its pain or nerve inflammation. But of course it does make a difference in terms of the management of the condition; its the strk difference between something and nothing; of being a patient of interest and a patient of no interest. I have been pushed gently, but firmly, into the hands of the universal Cinderella service i.e. the Pain Clinic; no wonder the Consultant is a man on the verge of a nervous breakdown – the question is who gets there first me or him? Either I bone up on Opera – his favoured subject of conversation – or I avoid him unless absolutely desperate!
Still mustn’t grumble in this increasingly unstable global situation life could be one hell of a lot well more hellish! So I’ll keep ploughing on and ask friends/colleagues to just allow a little longer for me to do things like cross roads – do you know how little time the pedestrian crossing allow? Not enough!