Posted by: ayrshirehealth | April 23, 2014

The wheels on the bus by @bmc875

My journey continues

‘I have had Rheumatoid Arthritis (RA) for several years now and have gradually progressed up the treatment ladder. In addition to painkillers and regular NSAID (a) pills, I also inject, every 2 weeks, with the Biologic drug Humira (Adalimumab[1]). This has worked, effectively, for me.’

 Towards the end of last year, I developed a small sore on the side of my nose. It got bigger, constantly wept a small bloody discharge and itched like hell! A visit to my GP in late October, resulted in me being referred to see an ENT (b) surgeon. Brian BCCMy GP mentioned BCC (c) and, loosely, linked it to my outdoors lifestyle. I spent over 30 years on the South coast of England and walked the Sussex Downs at every opportunity. I had a very fit dog too! I was also aware of the warnings accompanying the use of Humira.

Five weeks later, I met an ENT Consultant & Nurse as an outpatient at University Hospital Crosshouse. Nice folk and they worked well together. Surgery for several small lesions was recommended, an estimate of 1 1/2 to 2 hours ‘on the table’ at the Day Surgery Unit (DSU).

Observation. Disappointment management at its best. “Well done that Nurse”.

Arriving at the DSU on 31 January at 0900, I was ‘booked in, and asked to wait until I was called by a nurse. It took longer than normal but my wife and I were eventually shown into a side office. It appeared that the surgeon had been called out for an emergency during the night and, as a result, was unable to operate that day. The Nurse explained that as soon as they had found out, they had phoned me at home, but by that time we had left. Within days, I received a re-appointment and went through the normal confirmation phone call. All set for 26th February.

I arrived in plenty of time for my 14.00hrs appointment and was called almost straight away. This time a review was carried out of BP/BS (d) etc and I was shown to the changing area

Observation. Excellent disappointment management. Good patient involvement.

Perhaps a support issue with his ‘List’.

The Theatre waiting room was full. Many men in dressing gowns – some the right way round – and an air of uncertainty prevailed. By this time I was relaxed and enjoying the strange sensation provided by my paper pants! I had confirmation that something was wrong when the guy next to me said he was the 10.30 appointment. It was now 15.00. screen-capture-20To cut a long story short, the surgeon emerged, called me to a side room, re-examined me and gave a reasonable explanation as to why he was late. In essence, he had two unplanned incidences of Cancer to deal with – each much more severe than initially thought. Also, It would appear that his previous, out-patient, assessment of the time required for my Op had not been carried forward to his schedule. He explained this in some detail. Again, disappointment management well handled. I suspect there was an error made in creating his ‘list’. (He mentioned that he had not been given the estimated duration of my procedure.) He commented that I had taken the ‘news’ well. I prefer to think he explained it well.

Observation. Truly first class communication skills, excellent nervous patient management

Just over 1 week later, I eventually made it on to the operating table. Everything was explained to me from wearing eye-pads (and a comical reference to their costs [iPads]), partial face screening, marking up my face, probable time on the table and, finally, an assurance that local anaesthetic would be used and monitored throughout the procedure. The major theatre contributors (Registrar, Theatre Nurse etc) were introduced and the procedure began. I cannot stress enough how reassuring it was to be asked, several times, “How are we doing under there?

About an hour and a half later it was over. I was taken to a side room to recover, have some tea and toast and to find out I had 20 very neat stitches around my nose. A Nurse gave me some painkillers, cream for my, undressed, nose, told me what to expect in terms of irritation and shortly after that, my wife and I left for home.

Did I mention I had Rheumatoid arthritis?

Through previous discussion with my Specialist RA (e) Nurse Robert, we had agreed when I should stop my Humira and Methotrexate (MTX) (f) in preparation for the procedure. Obviously, with the several cancellations, I was off them for longer than we had planned. I shared my concerns with Robert. He was a huge support. Just knowing he was there was invaluable.

Observation. Access to a named Professional.

After five days, I had the stitches removed at my GP’s surgery. One of the practice Nurses did this, commenting on the ’embroidery skills’ of the Surgeon, and advised me to use a moisturising lotion. I assumed this was to ensure the retention of my boyish good looks. (I’m 68!), I now have asymmetric nostrils where some ‘stretching’ had been done to cover the excised lesions. The surgeon told me this would happen, but would possibly return to normal after six months.

Back on the bus.

Normally I get my RA (e) bloods done monthly. It took several goes to ensure that everything had settled down post this procedure. On 14 April, I had my bloods done again, this time with RA markers ESR (g) and CRP (h). Perfect! A letter from my Surgeon confirmed skin cancer (Histology) and assured me that the excision was successful. It is over. I can resume my activities as a Community Volunteer.

“Did I mention the ‘Rider’?

TunnocksAlthough we have never met, I have known Derek (@DTBarron) for some time. We share a similar, caring, mind set and both have a wicked sense of humour. When I am asked to contribute to @AyrshireHealth (an honour for me), we discuss the going rate in terms of Tunnocks Caramel Wafers and Tunnock’s Tea Cakes* (And me a diabetic!).

Imagine my amusement when, within the DSU, in recovery, I was presented with a goodie bag containing both types of treat and a ‘Get Well’ card. Chuffed!

*Other forms of bribery are available.

 Conclusion

BrianThis ‘routine’ skin cancer procedure did not go to plan – several times. Great communication skills were demonstrated. I wonder if there is a problem ensuring that the surgeon has an accurate ‘List’. Access to my RA Specialist Nurse was a great consolation. I have no complaints; I know of others, however, who may have been less tolerant.

Footnote: “A whole journey waiting time target of 18 weeks from referral to treatment”.[i]

Well, I did not quite make it. I became a reportable incident in terms of failing to meet the Government requirements for time from referral to Surgery by about 1 week. I suspect Mr Neil MSP, Cabinet Secretary for Health and Well-being, may look kindly on this episode.

[1] Note: Cases of non-melanoma skin cancers have been observed in patients taking Humira. My GP, Consultant and Specialist RA Nurse work with me to monitor any outbreak or lesion. I make no assertion connecting the use of Humira and the occurrence of Basal Cell Carcinoma (BCC) or Squamous Cell Carcinoma (SCC).

[i] http://www.18weeks.scot.nhs.uk/

This week’s blogger was @brian875 (Brian McCulloch).  Brian, although now returned, left Ayrshire in Jan 1961 and joined the RAF, leaving in 1985.  He’s married in 1969 and has two grown up kids.  He’s also an Open University Graduate (Systems Engineering).  He worked in industry in West Sussex Hampshire till 2003 (Singer-Link, IBM Federal Systems and Lockheed Martin). Brian volunteered with: St Richard’s Hospital Chichester (Eye clinic) – 4Sight West Sussex Association for the blind (Shop and talking books repairs) – Headway Ayr (Computer tutor) – NAC – Library (Computer tutor) Largs, Fairlie and West Kilbride – Chest Heart and Stroke Scotland (Stroke communications groups), he now is a volunteer driver in Ayrshire.

Glossary

a) NSAID       Non Steroidal Anti-Inflammatory Drugs

b) ENT           Ear, Nose and Throat

c) BCC           Basal Cell Carcinoma

d) BP/BS           Blood pressure/Blood Sugar (Glucose)

e) RA                  Rheumatoid arthritis

f) MTX              Methotrexate (RA drug taken once a week)

g) ESR               Erythrocyte sedimentation rate

h) CRP                C-reactive protein (CRP)

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Responses

  1. what a great blog Brian. I am sure there were nerves all round at having to explain for a second time that things were not going to plan but it sounds like courage and compassion won the day. @HazelNMAHPDir

    • Thanks for your kind comment Hazel. (As I become more famous I will insist on more Tunnock’s Tea Cakes). I feel privileged to contribute.

  2. Hi Brian, Thanks for a great blog on your experiences. Its essential for us to see it from a different perspective. Clinicians are challenged with cancelling appointments for a variety of reasons , this is a great view of the impact this has. It is however challenging for the system to keep flowing with the pressure on it from a variety of different perspectives. Glad you liked the Tunnocks surprise , it took Maureen a while to find you that day to deliver them for Derek but i am sure it brought a smile to your face when you got them.

    • I was chatting to the admission Nurse at the time Mark and I was saying how much it meant to me, as a Patient, to contribute to this blog. And then Maureen turned up! A little thing perhaps, but a kind thought that I will remember.

  3. What a nice blog. I love how you have highlighted the positives despite the disappointing negatives. I hope you continue to enjoy your outdoor activities for many years to come.

  4. […] The wheels on the bus by Brian McCulloch on the Ayrshire Health blog […]

  5. Brian. I have Osteo Arthritis, and have gained great relief from taking Turmeric spice as a tea type drink. Google it and see what you think. I make it with a half cup of warm milk, stir in a heaped T spoon of Turmeric, and to make it more palatable I sweeten it with honey, I also put in a twist of black pepper. It does the biz for me.

    http://authoritynutrition.com/top-10-evidence-based-health-benefits-of-turmeric/

    There are other ways to take Turmeric, obviously in Curry etc.

    Best wished mate, Hen.

    • Thanks for that Hen. Will give it a look. Looks like it is a possible anti-inflammatory aid for Osteo and Rheumatoid.

  6. Brian, a fantastic journal of cheerful travel through our system. Interesting to note some amazing care but also some poor processes that we need to fix. Best wishes, enjoy the Tunnocks and keep commenting on our services ………we only need one person to comment for us to take note and change

    • Thanks Fiona. My final visit to Surgeon (last week) was equally cheerful. We openly discussed the cancellations, in a positive way. We concluded that ‘bad things happen, its how you deal with them that is important!’ Thanks again to you and your team.

  7. […] the way, but praises the communication skills of the nurses and doctors and the explanations given. The wheels on the bus are still […]


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