So how do I know?
My husband was told in the first few days after my own catastrophic brainstem stroke:
‘She’d be better off dead.’
Andrew Mars wife was told:
‘He will survive but he’ll be a vegetable for the rest of his life.’
Andrew Woodgates’ wife was told:
‘If he survives this you’ll wish he hadn’t.’
Far too often, I think doctors are overly negative/pessimistic and far to soon after any kind of stroke (or serious illness for that matter).
I feel strongly that doctors remain honest but hopeful and must not dash all hope. I founded my charity – Fighting Strokes – (You can probably figure out why I called it that from the name!)
After all, no traumatised loved-one is wants any false promises, just balanced information – research & anecdotal – that there may be real possibilities.
Doctors are NOT GOD! No one has a crystal ball. Can we really factor in the love and commitment of proactive loved-ones coupled with the spirit, will, self-belief, motivation of particular patients.
I accept that the NHS has less and less money and resources to work with so there are enormous pressures on doctors and ICU units, but come on?
So here is my little list of things doctors must read in cases of serious stroke.
1. “All strokes are different. Fact. “You never lose a VOLUNTARY pathway if it returns!
PLEASE TELL THE PEOPLE AFFECTED BY STROKE & THE PATIENT!
2. “On a graph, we just don’t know where your loved-one will be. They could be like Kate Allatt, Richard Ford, Mark Ellis, who appear quite ‘normal’ considering after their period of locked-in syndrome. However, there are people like Tony Nicklinson who represented a very severe case indeed, with every single permutations in-between. We just don’t know the long-term prognosis in the early weeks or months of diagnosis.”
3. “Intensive and good therapy immediately after the coma and be patient-centered – psychological, emotional, neuro physiotherapy, Speech & language therapy (S.A.L.T), Electric Stimulation, PRACTICE..It’s about Repetition, Frequency & Intensity, as opposed to doing task related activities like getting dressed or making a bed.”
4. In brainstem strokes with locked in syndrome, “you must have an ‘end of word’ box on the colour-coded communication board in ICU & Rehab and a TV & radio, which gets switched on/off.”
5. “The word ‘plateau’ is GARBAGE! It is a term used by medics to describe the way progress will slow to almost nothing, but that is really due to NHS funding and ignorance, rather than the patients’ own desire or ability to improve.”
6. “Slow or fast, large or small, the patient will ALWAYS make progress improvements, following a stroke. If the patient must really want to work hard in therapy and alone. Please note, that progress does NOT come easily. I remind you of Christine Waddell, 17 years with locked in syndrome and actually making phenomenal progress. Fact. (Ill blog next time about her.)
Loved-ones must not try to do too much for the patient. It frustrates the patient and you. This also impacts on patient progress. This is deeply irritating, even though your intentions are not often borne out of irritation, but a genuine desire to help.”
7. The patient will feel, shock, pain, grief, boredom, sleeplessness, denial, anger, isolation, depression and acceptance. That’s the loss cycle. In time the patient MUST really want to improve. You can lead a horse to water, but you cannot make them drink it! I’ve learnt that. Be patient and be tolerant.
8. As Loved-Ones you MUST stand your ground with the medics and patient, be diplomatic, but forceful use video evidence, keep a diary. Don’t allow medics to accuse you of wanting your Loved-One back so much that you actually mis-see their small flicker or progress. Small flickers lead to big things! Proactive loved-ones are a key in the patients level of recovery. Video changes and keep a diary.
9. Read: The Brain That Changes Itself, by Norman Doidge. Research neuroplasticity and how the brain makes new pathways.
10. The patient MUST really WANT THIS & we must stop pretending to be patient-centred in hospital and start applying the theory!
This is worth bearing in mind:
Optimism and hope are related to better outcomes and depression to premature death and worse functional recovery.