9 months too late!

Another pack of stuff from the hospital today, from my Key Worker who will apparently “…act as a point of contact for you to provide information, advice and support.” Well, well well…

The content is great, with one possible exception, and I will come back to this later. The intrigue is that it’s 9 months too late! The ‘setup’ in the letter is :

  • “Following your appointment with Mr Phillips..” – which happened over 5 months ago
  • “…you have attended the pre-assessment clinic…” – twice, once 4 months ago and once about a month ago

It seems that my Key Worker will “..aim to visit me while (I am) an inpatient…to complete an holistic assessment which looks at any needs (I) may have”, although as she may not see me during my inpatient stay “..I will contact you …2 weeks after your discharge for routine follow-up.” So she only aims to visit me and if she doesn’t then my holistic needs assessment will not get done (or might get done 2 weeks after discharge, I’m unsure). Now this might just be poor wording or it might be that I am not ‘guaranteed’ a visit and holistic assessment of my needs before I am discharged, which is slightly concerning.

And it also seems that I have to contact her when I get  date for surgery – how difficult is it for the hospital to let her know?!

Anyway, grump over and on to the material content. As I mentioned above, most of it is very helpful, or would have been had I been given it at diagnosis.

  • A good leaflet from MacMillan explaining about the pituitary and tumours (although the phrase “usually always benign” might need clarifying!).
  • A leaflet about my Key Worker, who I now read I can “…expect to be given soon after your diagnosis…”. Well, if 9 months is soon then there is no wonder the NHS is in a bit of a state.
  • A leaflet about the Leeds Specialist Pituitary Service and their Multi-Disciplinary approach.
  • A leaflet from The Pituitary Foundation – who I had earlier found to be a good source of information, although if you read this column regularly you might recall that I found their support group somewhat less than supportive.
  • Finally a leaflet which while informative raises a totally new issue to me about Steroid Replacement Therapy. The letter offers the leaflet on the basis that “…it is usual to be prescribed steroids following surgery…! Well that is news to me, indeed I recall a discussion in which I was told that, because it is a non-functioning tumour and i have few adverse symptoms, it was quite likely that I would not need any ongoing drug treatment. Does this nurse know something I don’t? Is this a standard letter issues without thought or consideration of the individual circumstances?

So here we are again, some great and helpful stuff mixed up with processes that don’t seem to recognise me as an individual and which raise new questions (will my key worker see me in hospital to plan an ‘holistic assessment’? Will I be prescribed steroids and if so how come nobody has previously mentioned a cortisol deficiency?)!

I’m pleased that I am going to have the opportunity to draw the whole saga to the attention of the powers that be in LTHT and highlight a few areas where improvements in the patient experience can be made.

Meanwhile, I have booked a flight to SW France for late March in anticipation of surgery in early April.

2 responses to “9 months too late!

  1. Hi Geoff. For me, following a blood test it was discovered that I was low on Cortisol with the tumour and it was not certain for me whether the removal of the tumour would cure this, not affect it, or make it worse. In the event, after the tumour was removed, I had a “Short Synacthen Test” which aimed to measure my Cortisol output and it wasn’t any better or worse than it was before the tumour (but the tumour had to come out to save further damage to my optic nerve). In my case, my Cortisol is way too low, so beyond doubt. So I now take Hydrocortison tablets forever.

    I think the paragraph around steriod replacement is just a catch-all for pituitary issues. Not everyone needs Hydrocortisone afterwards. Better to say this more clearly in the leaflet I think!

  2. Thanks for your comment Carl. My cortisol is OK and I agree, it is probably a standard paragraph – the challenge is that people are not standard, we are all individual patients and the sooner the administrators realise that the better.

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