Southend Hospital Heroes Nomination

For the past few years Southend Hospital and local paper Evening Echo have had an award for a patient nominated Hospital Hero – “This is for an individual or team who consistently demonstrate high quality clinical care, with compassion”.  SCA UK Group member, Charlie Dickens is a patient at the hospital and had an idea for a nomination and we agree, and maybe you too?…

Why I’ll be nominating Dr Tom Keeble (Cardiologist) for an NHS Hospital Hero Award, and why I hope you’ll join me & nominate him too! I consider myself very lucky to have Dr Keeble as my cardiologist, and I know others in SCA UK feel the same.

Following 4 cardiac arrests, caused by a heart attack, I first met Dr Keeble when I was in hospital. He has a fantastic bed side manner, takes time at appointments to listen and assess, and goes out of his way to be available to his patients. He demonstrates an understanding of how we feel, the overwhelming trials that we survivors face psychologically and emotionally as well as physically. I trust him, and feel safe in his care, and for me that’s top of my list of wants about a Dr.

This group has proven to me that not all care is the same, many feel that they were ‘on their own’ on discharge from hospital, leaving with more questions than answers, and feeling very alone. I got to thinking about the NHS Hospital Hero Awards, and all the work that Dr Keeble has done for our group.

How he aims to develop aftercare for SCA survivors across the country. His work in developing and championing a Gold Standard. His recognition of the massive raft of issues experienced by survivors, will hopefully help to change the way we are treated now & in the future, consistently across the UK.

Dr Keeble, has not only been there for his own patients, but via 2 evening Webinars, made himself accessible to all survivors and families on the SCA UK group, answering questions and giving advice. For some it was clear it was the first opportunity they’d had to ask questions, and talk about the issues they’d faced in the wake of surviving death!

He has presented at conferences and forums, showing his passion for improving how survivors are supported in the aftermath of SCA. Most recently was his instrumental involvement in bringing together 127 individuals from across the country for a Guinness World Record attempt for the largest gathering of SCA survivors. A day which was full of emotion and joy for so many, as they got to meet people who also ‘get it’ & to share an overwhelming experience. Dr Keeble was there, volunteering, presenting, promoting the Gold standard, talking to survivors and their families and his passion is so obvious!

So my reason for this ramble is this! We all know that dying is actually the easy bit – surviving is much harder. Dr Tom Keeble is not just my Cardiologist. He has proved that he is working tirelessly for all of us, and for survivors who will go through ‘the system’ in the future. He is working to provide the support that will make surviving easier!

Please nominate and vote for Dr Tom Keeble as our NHS Hospital Herohe deserves it!

Charlotte (Charlie) Dickens

You can read more about the award at the Southend Hospital Heroes 2018 webpage.  The 3 top nominations will be put forward to the public vote, so we need to make sure he’s one of the top three!

To make nominating him a little easier we’ve created a Hospital Heroes 2018 Nomination Form which all you have to do is fill in the fields – most are obvious, name and contact details. the last field “YOUR_REASON” is the reason why you are nominating him. Maximum words for this fields is 250*.   To submit the nomination click the “Merge Document” button and that’s it!

Closing date is 5pm Monday July 30th!

*If you want to write a little bit we suggest you type it in another app first (notepad etc) and then copy & paste as there’s not much room to view what you’re typing

Ten Signs You Might be Getting Over Your Cardiac Arrest

Post by Ted G

So, you’ve had a sudden cardiac arrest. For you and many of us, this marks the beginning of long-term medical interventions and therapies designed to diagnose and treat the underlying cause or causes of this traumatic heart-stopping event. But while the family doctors, pharmacologists, cardiologists and/or electrophysiologists are working to ensure our cardiac systems are functioning well, the healthcare system seems content to let us fend for our own mental health. As a helpful tool, below are 10 signs that may indicate you are finally getting over the trauma of your sudden cardiac arrest.

  1. You wake up in the morning, or go to bed at night, feeling so good and so positive that you forget to take your meds. Warning: Forgetting to take your medications can also be a sign of a memory issue or a lapse in attentiveness, which are both very common outcomes, shortly after a sudden cardiac arrest. Feeling good and feeling positive about yourself isn’t a common outcome of a sudden cardiac arrest, however.
  2. An acquaintance tells you about their brush with death and, instead of politely interrupting them and detailing the slim probabilities of surviving a sudden cardiac arrest (around 5-8% and, surviving with intact cognitive functioning, less than that), you listen attentively. Note: Smiling or winking at your spouse or covertly rolling your eyes are acceptable coping mechanisms in this situation, and are a sign of maturity, not back-sliding.
  3. A family member asks how you’re recovering from your heart attack but your systolic blood pressure doesn’t increase by 10 mmHg and you don’t feel the need to correct them or give them a lecture on the difference between a myocardial infarction and a cardiac arrest, including producing a laminated colourful chart illustrating the characteristics of each. Instead, you simply say “I’m fine and getting better all the time” or words to that effect. Afterwards, you are permitted to have a shot of pure unrefined carrot juice to take the edge off. Enjoy!
  4. You’re out for a run, climbing some stairs or sensing that your partner is open to the idea of making love while the rest of the house is still quietly sleeping on a Saturday morning, and your heart races momentarily or you experience a premature ventricular contraction (PVC). Instead of rushing to your mobile phone, laptop or tablet and posting a question about the possible meanings of a racing heart or PVC on the Sudden Cardiac Arrest Facebook group, you keep running, finish the stair climb to your office or quietly close the bedroom door. Warning: While a racing heart and PVCs are very common phenomenon for everyone, regardless of whether they’ve ever had a cardiac issue, if your heart doesn’t stop racing or the PVCs come in triplets or more often, call your physician. This will be a difficult decision for some, especially in the latter example, but consider your partner’s reaction if s/he ends up having to call your physician, because you can’t.
  5. Your re-birthday passes, and you don’t notice. Note: This is a very promising sign of good mental health, unless you’re also forgetting to note your own birthday, Christmas, Thanksgiving, Hallowe’en and other significant events in your life (excepting folks whose religious beliefs preclude celebrating such events, of course).
  6. You notice that your family and friends have stopped asking about your health, in particular, they are not asking about or mentioning your cardiac health, and you are okay with that. Note: Getting over not being the centre of attention for a medical event is a great growth step. Savour it; you’re getting better. The exception is if you are currently in the hospital or recovering at home, in which case you should feel free to say: “What the hell is wrong with you people!” You have our blessing to do so.
  7. You find yourself getting engaged in helping others wade through the emotional challenges they are confronting after their own sudden cardiac arrest or helping others in some other capacity. Note: Again, this is a very positive step as it indicates that there’s been a shift in focus from internal to external, from yourself to others. A very common outcome of a sudden cardiac arrest is to become very much self-focussed and sensitive to how others are treating and reacting to you. Oftentimes, this can come at the expense of your relationships with others you care about. Shifting your focus externally, on others, is a very helpful and healthy step forward.
  8. You find yourself tired telling your sudden cardiac arrest story, so you edit it down to an elevator speech from the multi-page epic tragedy (in the poetic, not being sarcastic, sense), with its embellishments and references to your having died. Note: This is a huge step because if you’ve told your story so many times that even you are sick of it, you can be sure others are too. More importantly, telling your story often can help mitigate against PTSD and other emotional consequences.
  9. You stop wondering if every symptom of everyday life that manifests itself is somehow related to your sudden cardiac arrest or whatever underlying disorder caused it. Instead, some other reason pops into your mind first, such as the too many glasses of red wine you had last night or the fact that you’re now pushing 60 or that maybe running that half-marathon in 28 Celsius heat wasn’t the wisest decision or you’re just having a bad day and ought to go hug your kid. Note: Some of the more immediate and common emotional and cognitive consequences of a sudden cardiac arrest, and the treatments for its underlying causes, include: fatigue and tiredness, irritability, sensitivity to criticism, feeling vulnerable, lack of attentiveness, poor short-term memory capture, loss of confidence in oneself, feelings of loss, anxiety, and sadness or depression. Find a reason to get up in the morning: sometimes the best way to help yourself is to help others.
  10. You stop visiting the Sudden Cardiac Arrest Survivors, or other such FB groups, as often as you once did. While I’m certain that the Administrators of these groups are a little sad to see you less often than they once did, I’m positive they are also very delighted at how far you’ve come. Congratulations!

If 9 or more of these signs apply to you, you just may be getting better.

I’m fairly certain there are more signs. Perhaps others can list them.

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!!