Mind the gap

Post by Matt Brown

As I approach my first ‘re-birthday’ and after the amazing Guinness World Record Attempt day I have been reflecting on my own journey of recovery, even though there is still a way to travel with it. On the video we watched during the attempt it showed that, in terms of issues in recovery, 44 people stated they had psychological challenges and 19 also mentioned memory problems. While I wouldn’t say I haven’t experienced either of these, I was fortunate to have really good neuro rehab both at the Royal Berkshire Hospital, and also after discharge. Sadly, from reading posts on Facebook and from conversations on the day, I think I am an exception here.

I had my original SCA on the London Underground on June 27th  2017, then had a further 6 at St Barts before having an ICD fitted on July 2nd whilst not responding to any communication until July 8th. I started to speak a couple of days later and was transferred to the Royal Berks on July 15th, but I have no memory of being at St Barts, or for my first couple of weeks in the Royal Berks. My first recollection is July 29th, so I have ‘lost’ about 4 ½ weeks!

Once I got to the Royal Berks I was admitted to ICU for 4 days and then transferred to CCU on July 18th. On this date my wife, Sharon was told by the speech therapist that I was confused, and by the physio that I had told them I lived in Petersfield (my Mum and Dad do, I moved away over 30 years ago!),that I am an accountant (although my best friend is, I am not!) and that I support Reading. This last point was very concerning as I have been a Portsmouth season ticket holder for well over 30 years! I am pleased to report that by mid-afternoon when questioned by my twin sons (also Pompey season ticket holders) the confusion over my football loyalty had vanished.

Sharon was concerned that my confused state did not appear to be improving so came in early a couple of days later to see the consultant, who was conducting his rounds with some medical students, and said to them, about me, “This man obviously has brain damage,” which understandably, Sharon was not too happy to hear. Jenny (one of the physios) was also present and said to the other consultant, “he should be transferred to Caversham Ward”, and this was then repeated to the first consultant who mumbled a vague agreement but was basically non-committal on the subject.

Once the consultant had moved to the next patient, Sharon asked Jenny what Caversham Ward was and was told that it was a Neuro Rehab ward where you received physio, occupational health and neuro rehab on a personalised schedule devised for each patient. However, beds did not become available very often, and it could take up to 6 weeks to get transferred there. Sharon has never been afraid of a challenge and decided that she would do all she could to get me transferred to Caversham Ward, asking for an update each day from the nurses regarding any progress. On July 24th ,I was transferred to Whitley Ward (a cardio ward) and although this is where I finally became aware of things (strangely when I ‘woke up’ I wasn’t at all phased by being in hospital). Although I was receiving physio (even now I still have mobility problems due to nerve damage in my right leg) being in a cardio ward wasn’t much help for me as, since the ICD had been fitted, everything was working fine in that area.

Sharon continued her one-woman mission to get me transferred to Caversham Ward, and on July 31st it finally happened! My notes from my initial assessment there read “Reduced executive skills, reduced information processing speed, reduced concentration, reduced memory, fatigue, reduced exercise tolerance, anxiety, impulsiveness, reduced visuospatial constructional skills” so all in all not very good! I then embarked on a 5-day week where I would spend an hour every day at physio, and then an additional 2 hours on a combination of 2 from speech and language therapy, occupational health and psychology, including numerous assessments and developmental activities. Making scrambled egg for my ‘second breakfast’ was one of my favourite occupational health sessions!

I was the only non-stroke patient in Caversham Ward, so was a favourite with the nurses as I was able to dress and undress myself, feed myself, and go to the toilet without assistance! When I first arrived on the Ward I struggled to be able to read a full page of my book but by the week of my discharge from the Royal Berks (August 24th) I was spending about 30 minutes each day reading The Times and was able to retain most of what I had read- unbelievable progress in only 5 weeks.   

Once I was back home I experienced a real feeling of abandonment. Having been used to 3 hours of targeted rehab each day I now had to wait for appointments to come through, and for about 6 weeks I felt totally forgotten. The first to come through was physio, with a one-hour session each week. Kaye (the physio) also referred me to the long-term health conditions gym run by Wokingham Borough Council at my local leisure centre, which I now attend twice a week. As I am likely to have to have surgery on my Achilles tendon, as it has shrunk because of the nerve problems, Kaye said that improving my level of fitness will aid me in speeding up the recovery time. She also referred me to the community physio, who was able to come and see me at home and design exercises I was able to do, as like most people, I don’t have a fully equipped gym to work with!

Next was the community- based neuro rehab team, who once again carried out assessments, including the Rookwood driving assessment, and gave me some very useful guidance on improving my memory. By profession, I am a management development trainer, and as my memory is crucial to me in being able to deliver training I had been very anxious about whether I would be able to return to my job, particularly while I was in hospital. CBNRT got me to design and deliver a short training session to them, which boosted my confidence and self-belief immensely. One of the other areas I was struggling with was anxiety, and to help with this a psychologist also came to see me a few times, spending time on mindfulness, which has been very useful on more than a few occasions.

Many of us often believe that we are very lucky to have survived the SCA, and while I do agree with that, I believe my luck goes back to a Halloween party in the early 1980s where I first met Sharon. The lack of a clear pathway for SCA survivors means that most only have cardio rehab, and once the heart settles down are discharged from hospital. I was not in any state to demand a different approach but am amazingly fortunate that I had someone to fight my corner, and I can’t thank her enough for what she did. I have been back at work for four months now, am planning a working trip to the USA to deliver some training sessions over there (which I used to do regularly pre -SCA) and have recently completed my MBA by submitting a 15000-word dissertation None of this would have been possible if I hadn’t been transferred to Caversham Ward. The NHS is an incredible organisation staffed by the most wonderful, caring people but they are still learning how to treat SCA survivors, so our families shouldn’t be afraid to challenge them if they think there are better treatment options available. It can make a huge difference for us!

 Note from the editor:

This is actually being published on the anniversary of Matt’s fateful day – so Happy re-Birthday Matt!  Since forwarding the article he has also heard that he has passed his MBA dissertation with Distinction, a stupendous result!  Well done Matt!!

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