EP in Wales: I wonder if anyone can recommend... - AF Association

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EP in Wales

Tricia239
Tricia239
21 Replies

I wonder if anyone can recommend a good EP/Cardiologist in South Wales. I moved to Wales about 18 months ago and have had several health issues since. Unfortunately I've been really disappointed - well actually appalled, at the NHS in Wales. I had an ablation about 2 plus years ago at Bristol Royal Infirmary which seemed to be successful until I had a mastectomy in January 2018 since then I've had a few lengthy (2 weeks) episodes of AF. My local A&E is scary, like a third world country! and I don't want to go there again, so when I go into AF I just try to sit it out. My GP actually told me to go privately because the NHS waiting list was so long. I've taken his advice but after several appointments, and also now several hundred pounds lighter, I'm still not feeling confident or reassured by the professionals. I've never felt like this before and have always had faith in the Consultants etc., so any help or suggestions would be really welcome. I feel very alone and scared but no one seems to understand how I'm feeling - or perhaps they are just being kind and trying to make light of it. Tricia

21 Replies
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meadfoot

I understand your very real concerns totally. Are you in striking distance of Bristol and perhaps be able to restart with the medical teams there. I don't know if the Welsh system allows for you to be referred there. I live in England and was beyond disappointed locally and have been referred to the capital instead. Wow what a difference its Unbelievable. I too am scared of needing my local hospital as my experience has been so bad.

If you need to pay to see an EP then try Bristol if you feel confident in them. I am aware of people from north Wales having arrhythmia treatment in Liverpool so perhaps there is a system you could research.

Sorry you are having a tough time and feel isolated. This postcode lottery in a one nation uk is dreadful. Bug hug. X

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Tricia239
Tricia239
in reply to meadfoot

Thank you for your reply. I'm sorry you've also had an unpleasant local experience - at least you know where I'm coming from! I have already been back to the Consultant in Bristol who did my ablation but he didn't seem too keen to get involved and obviously reluctant to criticise colleagues in Wales. I could see him again privately but as I'm likely to need either another ablation, pace and ablate or even open heart surgery for a leaky valve, that is way beyond what I can afford privately. I really feel quite tearful about it all. I've now been referred to yet another Consultant following the stress test, so fingers crossed he will inspire me with more confidence. Thank you again.

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john6

It is not great down here, tbh I am literally going ground in circles, being not much further forward than when diagnosed 3.6 years ago. Unless you push/badger them then you seem to get lost in the system - where is your local Nhs?

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Tricia239
Tricia239
in reply to john6

I don't really understand the Welsh system - I think it is split between Cardiff and Swansea but the local A&E I get taken to if I get concerned when the AF gets too fast, or I get breathless, is The Royal Glamorgan although I'm probably closer to Bridgend. If it happens again I honestly think I will drive myself to Cardiff and go to the A&E at the University Hospital there; trouble is I don't fancy doing that late at night and then there is the problem if I am kept in and parking the car, and also leaving the dog. But they are minor problems really and can be solved. Whereabouts is your nearest hospital? Thank you for your reply. Tricia

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john6
john6
in reply to Tricia239

My nearest hospital is; Ysbyty Ystrad Fawr (near Caerphilly), probably the newest hospital in the UK @ 6.4 miles away. Then I have the UHW Cardiff @ 9.4 mile. However, 7 times out of 10, I have to go to the Royal Gwent Newport @ 15 miles away.........all great fun - not. I have had to do all the chasing re medical attention, follow up from a seasoned GP at my local practice was non existent. Fortunately I had to see another doctor due to his (my GPs) pending retirement, he has a poor bedside manner but gets things done - I can live with that.

I find that the hospitals admin is abysmal. Now that I am aware of that, I chase them up when an overdue appointment is not forthcoming - I keep on their case, or I will get lost in a pile of paper or the excuse of people on forever holidays.

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Tricia239
Tricia239
in reply to john6

I totally agree that NHS admin is appalling - in all areas. I chase too but it doesn't inspire confidence!

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sportscoach

Try Dr Peter O'Callaghan he is the main EP at The Heath hospital in Cardiff he also works for Spire Cardiff Hospital.

If you google his name etc it will give you his full profile.

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Tricia239

I've looked him up and he certainly sounds the part - I didn't realise he was the lead at The Heath - if I need A&E in the future that's where I'll try to head for! Many thanks.

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Bpsan
Bpsan
in reply to Tricia239

Hi. I live in Cardiff and had Takotsubo ( broken heart ) syndrome in march last year followed by a diagnosis of AFib in September. I was eventually on my request referred to cardiology by my GP but to my disappointment only saw the cardio nurse on my first appointment months later. Three months after that I was sent another appointment under dr O'Callaghan but again to my disappointment didn't see him but a junior dr. Very nice but he had to go off and ask dr O Callaghan for some of the answers to my questions and I honestly fid not feel confident that I was getting the care and insight that I wanted. How does one ever see an EP I wonder without paying privately?

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Tricia239
Tricia239
in reply to Bpsan

That’s the problem. My GP referred me to a Cardiologist in mid December, about 2 weeks ago I received a hospital letter saying my name was being put on a waiting list! I had already taken my GP’s advice and gone privately but it’s so expensive and the procedures are really expensive. The next one I may need is a TOE - yuck, which is at least £1,250 - so I guess I’ll have to use a credit card. I have already taken an equity release to cover the costs but don’t really want to go further down that road. When it’s your heart it’s just too scary to wait especially when no one knows what the problem is. I have been quite breathless since I came out of the last episode of AF. They think it might be a leaky mitral valve. I had never heard of Takotsubo; are you better now?

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Bpsan
Bpsan
in reply to Tricia239

Yes thank you - over the Takotsubo anyway but coping with the AFib. It's really frustrating to have to a) wait so long and b) not get to see the main guy after all but a nurse or junior. Especially as I had both diagnosis within 3 months. And as you say private is so expensive. It's a balance. It is your heart and if it's causing a lot of additional worry and stress I would take out the credit card. Good luck.

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Gowers

Sorry to hear you are still suffering and feelling scared - which is quite understandable.

The way I found my cardiologist (Worcestershire/birmingham area) was to goggle the name of nearest private hospital (over an hour by train & bus for me!)

Click on cardiology then Iook for patient reviews (there were loads!) But i went with the ones that had had problems similar to mine af/paf/tacycardia etc.

I phoned his secretary who assured me patients came from all over the country and he was very well respected by patients and staff. He only does the odd private clinic so I see him at the QE B.ham.

I think ?? Cardiff have a private hospital where you may find a cardiologist who also does nhs.

+

I also asked my gp who he would see if it was him & who in his experience has helped his other patients in the same situation with same symptoms.

I know the Swansea area well as used to live there + dad & my brother have been under cardiologists at Morriston + a friend had complex surgery in Morriston which he couldn't get in the Devon area where he lived previously.

I don't know how far Swansea is from you? but there is the Sancta Maria a small private hospital which may have cardiologists based there.

Also worth asking a nurse if you have to see one at the surgery/hospital for tests etc. + friends or neighbours if they can recc someone.

What treatment/s did they give you on your visit to A&E?

Hopefully someone on here may live in your area and be able to advise you further.

AF has changed my life (and that of others who post on here from time to time) - so be assured you are not alone.

Do post on here and let us know how you get on.

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Tricia239
Tricia239
in reply to Gowers

Thank you for your reply. I have looked up The Spire in Cardiff but it's confusing as there are quite a few Consultants who might fit the bill - the more you look the more you find and at the end of the day, without a recommendation it's just a name, if you know what I mean. I think it's a really good idea to ask my GP who he would chose, I'll do that next time I see him. It's good to hear about the Morriston, a friend of a friend has just had open heart surgery there today, so I'll be interested to hear who the surgeon was. When I went to A&E at The Royal Glamorgan (by ambulance) my heart rate was around the 140 mark; I was given one ECG and then BP and pulse taken about every half an hour, then I was given Bisoprolol and Digoxin and told to go for lunch; then they took BP and pulse; each time it was on an Omron and I saw my heart rate was 133 at which point they discharged me! At no time was I given a cubicle or put on a proper monitor - I was termed a Corridor Patient, and I wasn't the only one. There was a considerable Police presence and the whole time there was a man, I'm not sure where, screaming and shouting incomprehensively like a wild animal. I just hoped he was safely locked in a room somewhere - it really was quite scary. The second time I went a neighbour took me in because I was struggling to breath - again I wasn't given a cubicle and I wasn't put on a monitor, slowly my breathing improved even though no treatment was given and I more or less discharged myself. They wanted to do a chest x-ray and take bloods but I knew there was nothing wrong with my lungs and I'd had loads of bloods taken just the previous day so I declined the tests. On each occasion I was shown into a room where they did an ECG and that room was quite scruffy and dirty and on the first occasion I even had to knock some rubbish off the couch. In fairness I felt really sorry for the staff they were obviously flat out and extremely tired especially on the second occasion which was close to the end of their shift.

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Gowers
Gowers
in reply to Tricia239

You certainly didn't have a good experience of A&E I would have thought they would at least have fast tracked you to the appropriate person, sounds very scary.

I count myself very fortunate as when I have had problems with meds/af or become anxious I ring up the cardiologists secretary (nhs) and she always seems able to fit me in as an "add on" to his clinic.

Were there any patient reviews of the cardiologists you looked up? Very often you can relate to their experiences.

Will be interesting to know how your friend got on at Morriston - I'm sure you will be under the care of the right person soon.

By the way - I had a "heart reveal device" fitted a year ago (nhs) it's brilliant as it records 24x7 what your heart is doing so, when I have had af for hours I download it onto the device at side of bed and call the hosp cardio dept/ep etc few days or week later and the ep or cardio nurse can tell me over the phone exactly what has happened during an event - heart rate/rhythm/ exact time it started & ended. Well worth asking about. You can google the info on-line. Took about 15mins to have it inserted so only in hosp half a day. Don't know if its available in your area but it really is one of the best ways of having your heart monitored and has meant I haven't had to go to A&E again. Although I would if the af didn't right itself. It can stay in for up to 3years! My af never really showed up on the 24hour or 7day monitors.

My dad in approx 1997 had to wait 9 months to be seen in Morriston cardio dept after collapsing at home but, he did have a very good cardiologist in the end - that was a long while ago so shows how the nhs is struggling.

Do let us know how you get on

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Tricia239
Tricia239
in reply to Gowers

Your device sounds fascinating - so clever. I always know when I'm in AF and it always shows on the ECG or monitor, but equally I get all sorts of funny blips and feelings and never know what they are, so it would be interesting to know what's going on - sometimes though I think I can be a bit of an ostrich!!!

Best wishes, Tricia

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amyrosie

Hello, I live in Newport and have seen an EP called Dr Barry for a couple of private consultations in the past year, whan I have been desperate to see someone for advice. He is based in Morriston but I saw him at The Spire in Cardiff. (£180). He changed my medication and referred me back to the NHS for the 'next steps'. Getting and NHS consultation is the problem with the waiting lists as they are. Please get in touch if I can be of further help. All the best x

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Tricia239
Tricia239
in reply to amyrosie

Hi, Thank you. I have actually seen Dr Barry at The Spire and I liked him but he has referred me on and now I've been referred on again - I think that hasn't helped the way I feel. I suppose it is all good because each one is referring me to someone who specialises but at the same time I feel I'm being passed around. No doubt when the tests are done and they discover what is wrong I will settle under one Consultant, but as you say, it is the NHS waiting list that are so worrying. I can't keep paying privately, it's so expensive. I also think there are a lot more people opting to go privately now and I suspect that is as a result of the dreadful state of the NHS. I've had some really bad experiences since I moved to Wales and have thought of going down the political route to complain. Forgive me, I know one shouldn't talk politics but I can't help but think that free prescriptions and free hospital parking are all very well but at what cost. I'm not suggesting they should be as extortionate as in England, but there must be a happy medium.......and don't get me started on dual signage (just think how much that costs and what a boost that would be to the NHS!) Apologies if I've ruffled feathers! Best wishes, Tricia

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amyrosie

P. S. Dr. Barry was recommended to me by a GP who had actually himself had an ablation carried out by him at Morriston.

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Tricia239
Tricia239
in reply to amyrosie

Only just seen this - that's really interesting, and reassuring. Thanks.

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heartbeat4

There is also a Dr Dewi Thomas working at Morriston someone told me he was very good I looked him up on the Spire hospital Cardiff and he seems to have a good write up you could have a look at that.

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Tricia239

I noticed him too, so I will keep him in mind. I think I'll just wait and see how my next consultation goes because that is with a Consultant I've not yet met and perhaps, fingers crossed, I'll feel reassured by him. Thank you for your help. Tricia

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