Jaja's guide to Self-Advocacy

 

Self-Advocacy

I have, in the main, been very lucky in my Atrial Fibrillation/Flutter story in respect of the medical professionals I have dealt with.  However, not everyone has the same experience and I thought I could put down some ideas on how to push your own case and help yourself.

Most of this is common-sense and so may come across as patronising.  This was never my intention and so I apologise in advance if you find it to be so.

Common-sense disclaimer – this is general advice and must be guided by your medical professional.

·         Find out all you can about your condition.  Read up online from reliable sources – such as the charities or NHS website – there are lots of good American ones too such as Mayo Clinic.  I found it helpful after my ablations to read and ask questions on some of the many patient lead forums, but be warned some of these can be quite toxic (I was once told I had caused my own AFib by being too fit!).  Facebook is a good place to find out others experiences and I found it to be less judgmental (I know! Such a toxic place usually!)

 

·         If safe to do so, do all you can to help yourself – in other words be proactive– I’m talking primarily about AFib here, but it sort of applies to any condition.  So, for Afib – lose weight, exercise even if you can only walk for thirty seconds and have to rest; cut out alcohol; sleep well; avoid fags; avoid illicit drugs; clean up your diet as much as you can; keep hydrated and keep an eye out for triggers which set off the Afib.

 

·         If you do find any triggers for your afib, write them down – are they consistent or coincidence? Can you find a trigger to get back into NSR - one guy used vigorous exercise, but I’ve never felt well enough to do that! Cold water on face or cold shower! Breathing into a syringe!  I’m sure there are many more!

 

·         Before your medical appointment – write down a list of questions you would like answered – forums or AI or the helplines will be happy to suggest some if you cannot think of any.  When you have the appointment, if you can, take a friend or family member and get them to write down the answers.  Or record the session on your phone – you are legally allowed to do so, but it is just polite to tell the medic first.

 

·         Also, think about what YOU want from the appointment.  For example, they may suggest an ablation even though your Afib might be mostly controlled.  Ablations take some getting over and often only result in your needing less drugs though some lucky people are ‘cured’ or Afib free for years and years – perhaps ever.  Take into account your situation, your age, your fitness.  Bear in mind that the medics idea of success is probably very different from your own – i.e. they count an ablation as a success if you get less Afib than before after one year – if you are like me, you’d expect a lot more than that!

 

·         Be prepared to grill the medic – ask as many questions as you like.  If you don’t understand the answer, ask again and again. Find out how to ask further questions after the appointment if necessary – that may be via his/her secretary or via specialist Afib nurses.  These contacts are better than gold dust!

 

·         BUT do not waffle.  The medic does not want to hear about Mrs Jones down the road who pegged out because she was taking such-and-such drug.  Neither are they interested in your other ailments unless they are, or may be, connected to your Afib (or whatever condition you are seeing them about).  Remember, they have limited time and you are using it up!!

 

·         It goes without saying but be open, honest, polite, friendly and questioning.  If you get rattled and realise you may have come across as a bit rude, then explain that.  I once had a right moan at the A&E doctor at my local hospital (useless re Afib – I once spent a total of 3.5 weeks as an in-patient when all I needed was a cardioversion!) when she said the cardiologist wanted to try an IV drug.  I think I was pretty rude.  When she returned later, I apologised and explained my previous experience.  She said that she didn’t think I had been rude and added that SHE would have felt the same if she had been messed about like that!  But she really appreciated the apology.  And, obviously, never shout or swear – these people are fellow human beings too.

 

·         Don’t forget that if you don’t hear anything you must chase it – letters get lost, referrals get forgotten, humans make mistakes.  I once waited six weeks for an appointment at the marvellous Papworth hospital.  I had been told six weeks and when that came and went, I called and found out that I WAS on the list but I had not been ‘activated’ – whatever that meant!  Actually, what it meant was another six-week wait!

 

·         If you are unhappy with your treatment, you can get a second opinion either via a private source or even via the NHS (though you will have to wait).  You can also phone the various charities to do with your condition and ask for their opinion and help.

 

·         Make friends with the Arrhythmia nurses and secretaries (or other specialities) – be nice to them – it’s not their fault you’ve had to wait!

 

·         Tell the experts what YOU think and what YOU want – you know your body best BUT be humble too as they know a whole lot more than you do about medical practice.  I like to preface my awkward questions with a jokey comment like “I’m not trying to tell you how to do your job, but is there a reason why you have not suggested ablation (for example)?”.  Or “Professor Google told me…..”. 

 

·         You don’t have to agree with their treatment plan.  When I was told I needed a fourth ablation (in four years) as I could not stay on the amiodarone drug, I refused at that time as I felt I needed a break.  Two years on, having had a SCAD and a Minimaze surgical ablation I have again postponed the “touch-up” Atrial flutter ablation, scheduled for later this year, for the same reason.  Explain your reasoning, thank them for the offer of treatment and say you would like to think about it.  Sometimes they will still add you to the waiting list (which is handy if you decide to go ahead), sometimes they will remove you and you will have to wait again.  When you get the appointment, you do not have to accept it – your body, your choice.  BUT you are usually removed from the waiting list if you turn down two appointments, so be careful of that.

 

·         Obvious one – but if you cannot attend or decide not to go ahead, please please please let the hospital now.  There are often very sick people desperate for an urgent appointment (I’ve been one of those) for whom a sudden “Can you come in next week?” shock call is also a godsend.  Besides, it’s just polite!

 

·         Remember there are sometimes good reasons why they will not do some treatments or prescribe some drugs.  In my previous job, I saw a lot of people with back pain and many would complain that “They won’t give me a scan”.  There are good reasons for this – the treatment for the back pain would normally be EXACTLY the same regardless of what the scan said; there are health risks to all scans and they cost a whole lot of money so no point doing them if they do not inform your treatment.  Also, you tend to find a whole lot of other stuff once you begin looking too closely which then opens a can of worms – for example, my ‘mis-plumbed’ liver led to another whole lot of offered scans even though there is no treatment for it!!  We also discovered that one of the arteries in my neck is too skinny too, but it’s probably been like that my whole life.  The more you scan and test the more you find….  It’s why American medicine (or any private medicine) loves to do these wellness checks – it opens up a whole new lucrative avenue to explore and refer you to their mates (I may be too cynical about private medicine 😊)

 

·         There are also protocols for them to follow which inform what treatment you can have.  Although I have complained bitterly about the fact that my local hospital always tries IV anti-arrhythmic drugs rather than cardioversion despite it not working, in my calmer moments I realise that there is a reason for that – they have protocols they must follow – try this drug, then that, lower the heart rate with drugs, book for cardioversion in the distant future.  Sadly, the A&E guys and even the cardiologists at my local hospital just will not look at my history and say, in my case, "Ok this doesn’t ever work, the drugs will make her feel awful – let’s just do the cardioversion now".  They also HATE being told that Papworth have said I should always have cardioversion as the first line of treatment!  I think it injures their professional pride and really gets their backs up.  All this is not helped by the fact that they cannot see Papworth’s records.  However, the big teaching hospital next to Papworth are happy to go to them for advice!!  Odd.

 

·         Tell the medics what YOU think should happen and what you would like to happen – but tell them respectfully!  Something like “Thank you for what you are trying to do for me; I appreciate it but I think at this time I’ll stay with the amiodarone and see how I get on”.  Then find out how to change your mind if you decide to!

 

·         Always thank them EVEN if you are unhappy.  They are doing their best in difficult circumstances.  They are humans, be nice even if you have to tell them that you are very unhappy with the outcome of the appointment.  As mentioned, they are restrained by time, protocols, money and even their personal preferences and biases.  In my experience, Electrocardiologists love to offer ablations and hate to use amiodarone, whereas at my local hospital my excellent cardiologist (yes, there is one at the local hospital!) LOVES amiodarone and is cynical about ablations!

 

·         Finally, as an absolute last resort you can speak to PALS (PAtient Liaison Service).  These are liaison services between patient and the hospital.  They will look into your problem and speak to the medics.  I have used it twice with my local hospital – firstly, because I was frustrated with my treatment as an inpatient and then, same instance, for an official complaint after being discharged by the cardiologists in a dreadful state. It didn’t achieve much but I did, at least, get a much more polite medic to come and sit and go through everything patiently with me so at least I could understand their point of view and their clinical opinions.

 

·         Finally, just one more thing.  You can ask to see a different doctor for your out-patient appointments.  I had a pig ignorant doctor at the local hospital and asked to be transferred to a much nicer one who I felt comfortable with (as mentioned above).  I’m told that the former doctor was an excellent cardiologist, but I could not tolerate being spoken to like an idiot and could not respect anyone who did so, regardless of his expertise.  However, sometimes excellent doctors (and often surgeons?) lack communication skills, but are brilliant so you just have to suck it up!

 

 

Please add any other tips you might have in the comments and I will incorporate them into this fact sheet to help others.

Thanks for reading – I hope you found it helpful xx