OK. This one requires a serious tone I guess. We’ll see how well I can sustain it!
There is something special & different about having cancer, whether I like it or not & setting aside my personal & professional prejudices about the inequalities between the support which people with cancer & those with other long-term conditions experience & endure.
In addition to the services offered by the NHS, there is so much more!
Local Authorities, allied charitable organisations, condition specific support groups & hospice services are out there for the asking. From help with physical symptoms, practical & financial advice & support, emotional well-being, relationship counselling -pretty much everything really.
Whether you live in Scotland, Northern Ireland, Wales or England, it’s likely that the person with cancer will have received a wheelbarrow’s worth of printed information, which is as it should be & highly commendable.
I’ve mentioned before that the people (professionals etc.) “in the know”, on the Other Side of the Looking Glass, sometimes forget that we the people who this thing is happening to are not.
The professionals providing care & treatment are an important & positive part of the Rollercoaster Riders’ experience, however there is so potentially much more that can be tapped into which people are not aware of & no-one seems to check to find out whether patients & carers are aware of it: after all – we give them all the leaflets don’t we?
“So Holly” some of you may be thinking “What’s the problem?”
Well, Dear Reader – this is the problem. When you are significantly unwell, no matter with what, you don’t necessarily have the spare capacity or energy to read your wheelbarrow’s worth. I’m not alone in this.
I’ve done a little straw-poll of people in similar circumstances & the consensus seems to be that with the best will in the World, even though we may start off with every intention of reading everything which we are given, at some point we stop. It isn’t an act of denial or because we are disinterested or just plain difficult, the Wheelbarrow of Information just becomes to heavy to push around, let alone to sift & select.
I was talking to Ice Cream Sundae earlier today & comparing notes about her experiences at Springfield Cancer Centre (UK) & my own. I mentioned that I had been to see the Complementary Therapist today for an assessment appointment, a referral which arose after my first weekly Review Appointment with one of the Senior Radiographers. Had she, I wondered, been offered something similar to me three years ago when she was on the Rollercoaster Ride? The answer was that no she hadn’t, which she quickly revised to “Well I might have been, but I didn’t read all the stuff I was given…”
Of course, no two people have an identical experience, however it was clear from our conversation that she was blissfully unaware at the time that there were additional resources available to cancer patients & in brief, it was because she was unable to read all of the information.
Similarly, what about people with low or no reading skills? what about those who don’t have English as the first language & perhaps even if they do they only speak it? What if you have a sensory impairment ? I was told a little while ago by a relative who has been deaf since childhood & uses sign language to communicate that while they were the patient’s next of kin – no-one thought to find out whether or not they were adequately informed. One of my oldest friends, articulate & bright has extreme dyslexia & has found other ways to assimilate information, but wouldn’t volunteer this unless asked.
The hugely positive thing about my current experience is that I am under the care of the Specialist Radiographer’s at Springfield CC & that they have a pretty sophisticated approach to patient care. The “simple” strategy of having a weekly check point plus brief questionnaire to complete means that they can pick up the slack of any shortcomings in the patient’s knowledge about what is available.
The critical thing is that nobody on the Other Side of the Looking Glass relies on or takes for granted that giving printed information to us is either appropriate or adequate…
Finally, just a quick random thought about the use of Volunteers in outpatient clinic areas – they are certainly available at Springfield CC Radiotherapy Clinic. I haven’t noticed any of them so far approaching people waiting, especially those who come alone or look a bit lost or forlorn. Surely this is a golden, missed opportunity to find out how people are doing, do they know about the resources which are available, have they had information given to them in a suitable format???