correspondenceIt won’t surprise you to hear that my personal post bag contains a significant amount of correspondence from a range of health practitioners all dealing (badly) with the various aspects of my ‘condition’. If the appointments made by the hospital were kept I personally could save several saplings a year which given ash dieback shouldn’t be dismissed lightly! I had a particularly good example recently, (which I recall having bored you with before), which is worth repeating.

Initial appointment on 10 May I receive a letter cancelling the appointment on 17 May (for unforeseen circumstances); another appointment is given for 20 September. I phone to say I really need to see the Consultant sooner and hear nothing. On 2 August I get a letter cancelling the 20 September with no alternative appointment. Out of the blue I get a phone call saying an extra clinic is being held on 9 August. A letter also dated 2 August confirms the appointment for the 9 August.  On the 9 August I am given the follow-up appointment for 23 November 2012.

The appointment on the 9 August nicely put offers no further solutions; on this occasion the Consultant is running 45 minutes behind and gives every sign of a man on the verge of a nervous breakdown – Spanish Film Director Almodovar could observe him for tips should he consider a companion piece to Women On The Verge Of A Nervous Breakdown.  But hey the clinic happened so perhaps things are getting back on track; how wrong was I. 12 October  letter received cancelling the follow-up appointment on the 23 November and giving an appointment for 28 December. Being between Christmas and New Year and not hailing from Cardiff I will be in England with my family. Perhaps that’s the problem; I jest of course.

When I phone to explain I am unable to attend the alternative appointment the call handler in Appointments ‘Helpline’ gets rather shirty; the precise details of my absence is demanded before she has to consult her supervisor! I am told she’s can’t help further and the Patient Co-ordinator would be in touch. Letter dated 29 October gives an appointment for 8 February; the day I receive the letter the Patient Co-ordinator phones to cancel the appointment!  Unable to make an alternative in November an appointment is made for 22 February 2013.

The scenario above is for the Chronic Pain Relief Clinic; had the Neurologists not said the current problems I am managing – mobility in freefall; ditto sensation and co-ordination; add in shocking balance with a liberal dash of acute tingling in both hands and a suspicion that the optic neuritis is active – are not due to nerve inflammation i.e. not their (neurological) problem and are a pain management problem then the situation wouldn’t be quite so ‘irritating’. To quote the Neurologist ‘we do rely heavily on the Pain Clinic’. You might be quite an attractive young woman lady but frankly yer not funny!

Anyway me and the GP will hunker down and face the demons entre nous; bless him he’s the only one who listens to me. When I said I wanted to just see him (there are c12 doctors in the Practice) as it was easier than repeating things at length each time, he agreed. I thanked him and said he was the only one who actually listened to me he looked at me and said ‘that’s all I can do, I really do feel for you’. Human compassion means a lot. His response left me a tad bemused as one of the previous locums I’d seen who was, to be honest, rather a cold fish; she is his wife. Opposites attract apparently…

So imagine my utter amusement at receiving a letter from the Waiting List Validation Unit following up a letter of12 October confirming a referral had been received to see a different Consultant. This particular shenanigans began in autumn 2011but the relevant bit being from April/May 2012 when as requested I phoned for a follow-up (to February appointment). The course of treatment had not eased the symptoms (and believe me I gave the newly licenced drug, (that I found out subsequently it had been incorrectly categorised), a good run! When I phoned up for the follow-up I was told I’d been discharged! So September I get back into the waiting list system.

The letter received this weekend reads:

Dear Patient (oh indeed one has to be very patient in this area)

Our records show that you are waiting for a CLINIC APPOINTMENT (capital letter indicate the ‘personalising of a standard letter’) at the Hospital. We are currently reviewing all our waiting lists and need your help to ensure that we have up-to-date personal details on our computer systems. (Ooh you have systems do you?)

Therefore could you take the time (might want to say please)to complete the enclosed form, indicating any changes to your personal details and also include any dates that you will not be available for treatment. Please note, should an episode of unavailability be in excess of 8 weeks you will be removed from the waiting list and your GP informed. (Are you threatening me?) This is in line with current Waiting List Policy guidance. (Would this be the guidance you’ve just introduced perchance? After a less than perfect internal/external audit perhaps?)

Please can you return the completed form to us by Friday 21st December 2012 using the pre-paid envelope provided.

If you have any queries regarding this letter please contact the Validation Unit on the above telephone number.

Thank you for your help.

Yours sincerely (no I think you mean faithfully as you didn’t address me by name?)

Waiting List Validation Unit

Frankly having a chronic long term incurable condition is difficult enough especially juggling the various disjointed strands of intervention; I hate being managed but to be badly managed borders on the intolerable at time. Tedious and very very boring!

The current deterioration seems especially well cruel as its attacking the two senses I rely on for a degree of satisfaction/achievement: my hands and my eyes. Typing exacerbates the tingling in my hands – imagine your hands are filled with sand and someone is shaking them vigoriously. And the tingling does stop when I stop typing; oh no it echoes for several hours afterwards! The consequence of which is any fine motor movement is severely compromised – still on the bright side the Beautician I see  will be pleased as it means I don’t get busy with the tweezers as often!

Hmm I haven’t thought this one through as I’m off to prepare dinner for guests – still how much precision is needed for a risotto – that is largely prepared – so that would identify the risk area as pouring boiling water on the rice – without scalding myself – wish me luck!


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