I suppose the fact that the NHS is the biggest employer in Europe explains why sometimes we get this “hello left hand, right hand speaking” syndrome. Last Saturday we had a letter inviting me to attend the hospital in Bristol on Monday without saying why. All we knew was that it was an orthopædic ward and the name of the doctor was that of the guy who had performed the operation on my shoulder. If you’ve read Somersetland Adventures over the past couple of days you will know that as it turned out, I was not there for an orthopædic procedure at all, and neither did I see the doctor who’s name was on the letter. I found out on arrival that I was seeing a consultant radiologist (nice bloke!) and was wheeled down to the radiography department for what is known as ‘radio frequency ablation’ on the rib tumours. No one was able to explain to us why we had been directed to the orthopædic unit – in fact the staff there were as bemused and at a loss to know what was happening, as were we. But it all does seem rather strange doesn’t it? There is certainly an element of the left hand not being entirely certain as to what the right hand might be up to! However the treatment was carried out – apparently successfully, so no worries – au contraire – lots of thanks for the skill and patience and comparative speed of my progress through the system.

It does seem to me – as someone entirely new to the wonders and mysteries of the NHS, as I have never before called upon its services until all this started – that when a patient (such as I) has to pass through the hands of several health care professionals, each from a different discipline, that a “co-ordinator” should be appointed who can monitor the progress of that individual and be a conduit for information both internally between the doctors, carers and therapists on the one hand, and between the patient himself and the various health care workers on the other. For example I do not know if there is any one individual who has overall care or responsibility for me or not. I am totally unaware if someone somewhere is monitoring my progress or if there is an over- arching plan for my treatment, care and rehabilitation. If there is, perhaps I should know. If there isn’t perhaps there should be! Answers please on a post-card to…

At the moment I am directing all my enquiries and trying to find out what’s going-on through Jackie, my excellent Macmillan nurse based in Bristol. But she has far more important things to do than to run around answering mundane administrative questions such as these. As it is she is very kind and caring and does her very very best to answer my queries – but I’m not sure that this is what she is trained to do and it is probably not the best use of her valuable time.

On Wednesday another letter arrived inviting me to go for an X-ray at Bristol dental hospital ( ! ) at the request of another doctor whose name we haven’t come across before. The date for my requested attendance is Friday fortnight – 27th February. You will know that I am now waiting for two further principal treatments – the surgical removal of what’s left of my thyroid followed in short order by the ten days of isolation having radio iodine therapy – and I can’t have the therapy until I have had the surgery.

A phone call has brought that visit to Bristol forward by one week – I’m now going next Friday (20th). But no explanation as to why this is required or who this previously unknown doctor is. All frightfully frustrating…but they say patience is a virtue. It’s a virtue I must do some work on!

Yesterday had a visit from the delightful local palliative care nurse from St Margaret’s Hospice here in Yeovil, who was very helpful and confirming; and I also went to the hospice in the afternoon for some physio on my arm – also very good. But I made an error of judgment too. I had assumed after the treatment on both my shoulder and ribs that the pain level would have decreased and so, accordingly, I dropped the amount of painkillers I took. Big mistake. It hit me quite badly last night and I was still in some discomfort earlier this morning, but equilibrium now seems to have been regained and we’re back on an even keel. I wont try that one again in a hurry!!!

Comments on this entry:

  1. Blog stranger than fiction could be a best seller perhaps needs a love angle sort that out and I will be your agent.
    Sheron and i wish you all the best
    and will see you soon
    all the best pete

    — peter · Thursday 12 February, 2009 · #

  2. As always, your timing is impeccable Graeme.
    Only last week I was marking an essay from an overseas student who discussed the role of the nurse case manager. She described a role where nurses work closely with physicians with the aim of reducing the fragmentation of care for patients going through similar expereinces to yourself. These nurses, ‘case managers’ have the responsibility to coordinate services, transitioning care smoothly from one setting to the next. I am not an expert in the field of cancer care but I would suggest that you could ask about this when you next see your consultant. It may be that the arrangements will differ for your hospital-based care and community-based care, but worth asking.
    Thinking about you all, take care and as they say ‘keep taking the tablets’!!

    lots of love
    Caroline & Richard xx

    — caroline · Thursday 12 February, 2009 · #

  3. This lack of co-ordination is deeply distressing for you and anyone else involved in care from large hospitals with many different specialties involved in their treatment and care! My last 12 or so years with the NHS were in the community ….different system entirely…but having now caught up well and truly with the blog ( wanted to get everything in chronological order to evaluate it)and following your emails to me I can offer you a website worth looking at:
    www.nbt.nhs.uk/forpatients/pals This is mainly to point out PALS = Patient Advice and Liaison Service. It is especially for patients , their relatives and carers. It is a confidential service for you to air your concerns about the very thing you have written about re Co-ordinated Care . Left and Right hand is pertinant. You have enough concerns without worrying that the specialist departments are not informing you correctly at each stage. Changes to care can occur after meetings such as that which were discussed whilst you were on the table! Well Okay, sobeit. BUT , you should have been informed of each change to “order of service”
    (excuse the pun !) re your next stage of treatment…not to let you find out in the way you did. They (PALS) need to know….to improve! I will email you with more info

    — Chrissie Jarvis · Friday 13 February, 2009 · #

  4. I just read a bit about what the thyroid does and i am sitting on the edge of my seat so to speak as it were hoping that your next surgery will be sucesfull. I will definately say a prayer for you and god willing you will get trough this. You are a good man and you deserve better. Thinking of you and believe it or not saying a prayer for you Paul Kirk (forgive some of the spelling)

    — Paul · Monday 23 February, 2009 · #

  5. Dear Graeme,

    I have some happy memories of the all too brief and infrequent opportunities we had to be together in ministry. You’re a gem and I am deeply grateful to God for you and your generosity of spirit.
    You may have heard that I have returned to the Anglican fold -d Petertide 08, p Michelmas 08 and expect to have served title at Lee on Solent by Petertide 09 then who knows?
    You are in my prayers and in my heart.

    — Bill Matthews · Wednesday 4 March, 2009 · #