Prognosis & Progress at May 2012
The prognosis – neurologically – is not good. Bob is described as having a ‘Disorder of Consciousness’ from hypoxic brain injury (lack of oxygen to the brain during the cardiac arrest). However, I believe if he gets SMART assessment and therapy and his medication is reviewed, we may have a bit of a brighter outlook. The problem is that there are only three beds in the National Rehabilitation Hospital (http://www.nrh.ie/) for SMART assessment and Robert’s waiting time for one of those beds is currently nine months (as at time of writing, May 2012).
Myself and Ritamary visited four facilities in the UK in March: the Frenchay Hospital in Bristol(http://www.nbt.nhs.uk/find_us/frenchay_hospital.aspx), the Oxford Centre for Enablement (http://www.noc.nhs.uk/oce/), Glenside Manor Rehabilitation Centre in Salisbury (http://www.glensidemanor.co.uk/) and the Royal Hospital for Neuro-rehabilitation in Putney, London (http://www.rhn.org.uk/our-work/our-services/assessments/smart/) – where SMART originated.
All four of these centres had similar protocols for assessment and diagnosis; are dedicated and specialist neuro-treatment and rehabilitation facilities, and capable of dealing with a wide variety of consciousness disorders including hypoxic brain injury, as in Robert’s case.
Once a patient is medically stable, they would instigate a 12-week assessment, intervention and therapy course using SMART, WHIM (Wessex Head Injury Matrix) and observation by a specially-trained team of professionals on a 24-hours a day basis. After that time they would reassess the patient and their findings — or diagnosis — would determine the pathway of rehabilitation or longer-term care needs.
We are now trying to have Robert sent to Oxford for SMART assessment and therapy on the basis that:
- More complications are likely to develop while waiting for NRH placement: skin pressure ulceration, contractures and poor posture, depression (if he is aware – and the fact that he’s been crying would indicate he is) and withdrawal. He has already suffered from pressure sores, chest infections, MRSA, staph aureus and a urinary tract infection
- Nine to 12 months is a significant proportion of Robert’s lifetime – early involvement in his treatment might improve that life expectancy
- The unavoidable withdrawal of his medication for five days (because of a fractured food line) has already led to increased awareness (as predicted by Dr Derick Wade in Oxford) – review of which is one of the first protocols of any specialist neurological team in the UK. (Neurology didn’t see Robert while he was off his anti-seizure and muscle relaxant medication)
- Local policy is discriminatory age-wise and Robert should have the same priority and services as anyone else
The consultant neurologist in Robert’s hospital has applied to the HSE on his behalf for funding for this transfer and it has been refused on the grounds that the treatment is available in Ireland. However, I have appealed this and hope to convince them that Robert needs this sooner rather than later so that I can take him home and care for him myself. What I have to do is get ‘clinical information’ which will support my claim. That means getting a consultant to put our case to the HSE very strongly.
If you’re reading this blog, I may ask you to support me in a petition of some sort if they refuse me again.
May 2012 Status
There’s not a whole lot we can do until we meet with the National Rehabilitation Hospital’s neurologist on the 28th of May when we will try to enlist her support to have Bob placed at a UK facility as soon as possible.
The Oxford Centre for Enablement can take Robert right away, without even coming to see him, and they recommend a stay of 13 weeks with a report to the HSE at 6 weeks and then a further three months to ‘get things going if they can be got going’.
It seems that the sooner Bob gets this assessment the better for his long-term prognosis. All we can do at the moment is continue with our attempts at sensory stimuli. However, even that is better than nothing and it has brought him to where he is right now.
I take him outside every day, weather permitting, and we feed what has become an increasing population of pigeons (I bring seed and bread), some sparrows and lots of finches. This trip out can be a bit unnerving, especially when the blanket gets caught in the wheel of the chair and we’re stuck on the pedestrian crossing, or a smoker comes wandering over to try and help me manouvre the chair but doesn’t see the oxygen tank tucked into the back, but the hospital has no more private area than right outside the front door.
He’s doing really well without any antibiotics, he’s off paracetamol (which went on his Daily Prescription Chart or whatever it’s called ages ago and never came off until I asked them to stop it), and although he needs lots of rest and sleep, he still wakes and acknowledges that we’re there. We sometimes get a lot of head and lip movements, and sometimes he just relaxes with us.
We’re really proud of him – he’s come so far and it’s only by looking at the notes we keep of his behaviour and responses that we can see a pattern. There won’t be any ‘weekly’ updates, though: changes take longer to become evident. We know we’re on a long road but are willing to do the journey.