WELCOME TO ALL FELLOW CAMPAIGNERS for DISABILITY RIGHTS - a pan disability blog connecting my work with, EQUAL LIVES, the National Survivor User Network (NSUN) and the Survivor History Group.

Protest, Norwich Job Centre

Protest, Norwich Job Centre
Fatso Gets Militant!

Thursday, 22 October 2009

Circuitous Circus

About time I started a log for this circus - I know! It’s personal but what the hell, it’s got issues for us minnows..........and minnows are sensitive to being bounced back and forth......

16th February 2009: After 8 years of gradually increasing pain, referral by my GP to the James Paget University Hospital Pain Clinic.

23rd April: Seen by Consultant at the JPUG Pain Clinic - Said he couldn’t deal with my leg pains and to go back to my GP to ask for a referral for this - to take Paracetemol regularly (I was already taking Co-codamol regularly which didn’t touch the pain) - Arranged an X-ray which showed a couple of my lumbar vertebrae with no disc material left and a bloody great spike (an osteophite) sticking out of my spine. Told me an MRI scan wasn’t necessary and referred me to Physiotherapy. He, a pain clinic consultant did sweet f - all about the pain.

June 12th: 1st appt. with Physio. Lovely friendly woman with no airs and graces - and skilfully thorough. She repeated I needed to go back to my GP for a referral about the pain in my legs.

June 13th: Made appt with GP for June 29th

June 25th: 3rd Physio appt. Very sore afterwards.

June 26th, 27th and 28th: Agonising pain if I moved at all. Beached whale status for these 3 days.

June 29th: Crawled in to see GP. He took one look and filled me up with Tramadol and Pregabalin. A lot of relief from these. GP astonished at me being told to go back to him for referral on to another hospital department. “It’s a Pain Clinic. Shouldn’t they deal with pain whatever the aetiology.”

July 12th: Letter to the hospital PALS detailing the events thus far. Ending the letter with: “What I would like your help with (apart from taking note of the above anomalies for training purposes) is a referral for a second opinion and exploration of discogenesis.”

23rd July: Letter from the Pain Clinic consultant offering to see me to “talk through the concerns you raised...” Alternatively <b>my GP</b> could ask his colleague at JPUG to ‘review’ me or my GP could make a referral to the Norfolk and Norwich Hospital.

29th, 31st July, 3rd, 4th, 5th, 6th August: Thinking it would be the fairest option, phoned the Pain Clinic consultant’s secretary to make an appt as suggested. No reply each time.

10th August: Got through at last. Offered an appointment for 15th September. Said this was unreasonable in the circumstances. Secretary explained that both Pain Clinic doctors were away for the whole of August. Reluctantly accepted this appt.

12th August: Letter saying the appt for 15th September had to be cancelled and I would be seen on 13th October.

12th August: Contacted PALS saying that, in the circumstances, an appt for 13th October was unacceptable. PALS came back to me saying I had been put on the ‘cancellation list’ and should be seen soon after the consultant returned on 2nd September.

30th August: Off Tramadol. Very much aware of the addictive properties of this drug over even a medium term, I had tailed them off gradually over 3 weeks. Even so, withdrawal symptoms (nausea, stomach pains) over a couple of days.

21st September: Nothing heard from Pain Clinic.

21st September: JPUH AGM in the evening. Asked if any financial barriers to internal referrals had been thrown up by changes to the hospital status: “If a consultant wants to refer to another department, does that consultant have to commission the other department to do that work?” The answer came: “Well effectively that is a consultant to consultant referral..” I interjected: “But there’s no finance involved?” The reply was: “Well yes there is because the actual consultant to consultant may result in additional activity associated with that patient so that it may be actually associated with coming out of the final tariff for the patient - the final price for the patient...” I asked further: “The referring consultant - does he have to make a payment?” “No” was the reply. (the replies were from the JPUH Chief Executive and are verbatim - from an audio file).

However, there was then an interjection by the new JPUH Finance Officer: “Just in terms of the service pathway and consultant referral for every service path or service pathway there will be different agreements in terms of what stage. Obviously a patient can be referred back to their GP rather than a consultant because obviously the PCT is very interested in being able to know what demand there is and make sure they can actually see the demand for their services coming from the GPs into the trust as opposed from actually going from consultant to consultant. So in terms of that there will be patient pathways whereby consultant consultant will actually happen and there will be some where for certain conditions at a point in time the decision will be to push back to the GP and ask him to re-refer back into the piece if that’s agreed with the PCT” (also verbatim).


27th September: Still nothing heard from JPUH. Formal complaint made, cancelling the October 13th appt and saying: “I would like a full examination, including a proper scan (CT or MRI), to determine the aetiology of my pain which I experience in my legs, at lumbar level and at cervical level (in my arms and shoulders). There are also small absences of movement in my legs and feet shrugged off in the physiotherapy examination but which obviously play a part in some gait problems. Given that these failures have continued to affect my quality of life since I saw Dr Xxxxxx last April and are insidiously worsening all the time, I would like these corrections to take place in the very near future. I want nothing further to do with Dr Xxxxxx.” Acknowledgement of receipt of my complaint 2/3 days later.

14th October: Nothing further from JPUH. E mail to the Patient’s Association asking for advice (because I’m wondering could I, should I, sue for negligence?)

15th October P.M. In so much pain and unable to walk that Kate (my wife) took me to A&E. Given full examination by an excellent woman doctor (to exclude stenosis) and gently lectured that I must take Tramadol whatever my fears of addiction. Given enough Tramadol to last a few days and told I must see a GP tomorrow and ask for an urgent referral to an orthopaedic surgeon and an urgent referral for an MRI scan.

16th October: Saw the emergency GP at Loddon (not my GP but someone I know and who knows me well). Explained. Told he could do neither; said GPs at Loddon not allowed to refer directly to the orthopaedic surgeon and they’d had a directive that they could not refer directly for an MRI scan. Got crutches and further script for Tramadol (so far the Tramadol has made no difference this time).

16th October PM: Visit to see PALS at JPUH. Explained what had happened and asked for something to be done. Told our paths had crossed - they had just sent me an e mail saying I could have an urgent appt with Dr Notcutt (a pain consultant with a huge national reputation and who had built up the JPUH clinic on his own but who I understood had retired) - on condition my GP could phone the pain clinic on Monday to request the appt should be urgent.

16th October PM: E mail to my GP asking him to do this (he isn’t at the surgery on Fridays but I knew he would get the mail first thing Monday.

19th October: E mail from my GP asking for clarification. Mailed straight back.

20th October: Letter from JPUH with appt to see Dr Notcutt on Tuesday 24th November 2009. If this is their idea of ‘urgent’ I wonder what their routine appts are like?

And I want no cracks about “trampolining.“

1 comment:

Ruth Marsden said...


This sounds wholly dreadful - the clinical symptoms as well as the scenario itself. Creates great anxiety on basis of 'if a clued up individual cannot make progress, what hope is there for Joe Average?'



The Tough Tenor (when I could walk)!

In a Mellotone

In a Mellotone
Ah sweet Youffff