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| Kate Allatt A Rocky Stroke Recovery |
I flew into Belfast to visit a lovely, hospitable family last year.My arrival night was spent talking to the family about how we can try and help them INFLUENCE health professionals, to broaden their Brainstem survivors’ chances of making significant progress.
I was acting as a patient advocate.
- Understand the NHS cost centres and issues of budget management/constraints.
- Be familiar with the concept of ‘significant patient outcomes’ – What do medics consider ‘significant patient progress’? To grip? To drink? To smile? To talk? Ie. To do something functional?
- Risk of Silent aspiration RISK & foot drop. I suggest asking for a dye test to minimise the chances of chest infections from silent aspiration. Splinting should also be done every day on legs and hands for 12 hours. Regardless of what the research says. Foot drop means the patient will never walk again, even if pathways are formed anyway without the use of an FES machine.
- Ask the medics to explain: Was the stroke a full wipeout of the brainstem ie, right to left? If some of the brainstem is intact I believe there is hope for the brain to partially or fully re-wire, in my opinion. The only caveat is that the patient must be motivated to work hard; get quality, early intervention; and have a proactive supportive friends and family, again in MY OPINION. How else would medics explain the small or large improvements so far? (Read: The Brain That Changes Itself Norman Doidge.)
When they say that they are 90% sure the patient will never walk, talk, eat – how do they know? Then ask them to explain the patient progress to date? Are they God? In the same way, loved-ones must stay realistic about the level of progress made so far. Relatives must make themselves more knowledgeable than the medics, and must not appear desperate to medics. (Insist on them ramping up the early intensive therapy in the first 6 months.) - Do NOT let the highly specialised health professionals talk negatively about the patients’ potential future progress, ESPECIALLY in ear shot of the patient or you. That negativity is like a negative cancer.
- I repeat. A non-full-blown Brainstem stroke? There is ALWAYS real HOPE for patient improvement. SO GET IN FIGHT-MODE AS SOON AS POSSIBLE. (Especially in first 6 months-year).
- Ignorance of ICU staff of rehabilitation practices, other cases of locked in syndrome, that are both good and not so good. They are specialists at keeping people alive, that’s it. Although that’s massively important obviously.
- The reality is that every stroke is different and setbacks will happen all the time, especially chest infections. Demand a NOMINATED PATIENT ADVOCATE for the emotional and psychological issues your loved-one has to deal with in ICU. Note WHO IS NOT A PRIEST! No one wants to think they are being prepared for death!
- Early intensive therapy intervention in first six months is crucial.
- Patient might end up being like a Tony Nicklinson, Mark Ellis or Gary Parkinson or Christine Waddell or Richard Ford or Mia Austin or Bram or me type, NO ONE KNOWS AT THIS VERY EARLY STAGE and certainly NOT, whilst the patient is still in ICU.
- Patient motivation and drive to make progress improvement is essential.
- Additional continuous patient ‘willing’ outside of the therapy is also essential.
- You never lose a voluntary pathway if it returns and to work damn hard all the time. What else has the patient got to do?
- Please collect evidence of all the patient progress through phone video and diaries, to prove the patients’ progress has happened, to the OFTEN skeptical medics. By doing so you will distance yourself from being perceived as ‘desperate and in denial’ by health professionals.
- Make medics come up with a written treatment plan/promise for relatives, with bite sized patient-centred goals, which are reviewed very regularly.
- Dismiss the notion that as loved-one that you are somehow just desperate the patient recovers normally, you are realists, but that you want a fair crack at this NOW!
- Demand 3 hrs a day rehab in the first 6 months. Then review ‘significant progress or not’ then.
- Sleeping pills. ICU is a fearful place at night.
- Docking station for radio/iPod/TV.
- Which you TURN THE TV OFF & remove headphones.
- Loved-ones…. Don’t take patient being unable to control their anger, irritability, anxiety, frustration personally. Patient pleasantries go out of the window. THEY APPRECIATE YOU!
- Acute stroke patient rehab investment now please, it may just reduce long term patient care costs especially if the patient languishes in a nursing home, isn’t it false economy surely not to intervene?
- I understand, that Scandinavian countries have the best patient progress rates if Europe? Answer: is that because they start intensive rehab straight after the patient emerges from a coma?
- Tell the patient that you are doing everything, so he/she can be confident that you have ‘got his/her back covered.’ All he needs to do is meet you half way
- HOPE IS A WAKING DREAM Aristotle
Postcript…
Terry sadly passed away, due to infections and complications. He had the worst type of stroke I had ever seen – a spinal stroke where the blood clot broke off into his brainstem.
Clare was amazing and I will always remember laughing with Terry, and his whole family, at his bedside in ICU. He was much loved and his sense of mischief and humour remained well and truly intact.RIP Terry.
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