Accessing information

[JoJerrome]

Hello. The AF Association is looking at how we can support improvement in accessing information. Ideally we would like to ensure that all people diagnosed with AF were given either information or guidance on how they can access reliable information. I would value everyone's comments on what key information they think everyone with AF should be given (or signposted to), and where a person should be able to access this (from their GP / pharmacy / on line???). Please feel free to reply to me either on this Forum or by emailing [e-mail] Thank you.. Jo Jerrome

[Hidden]

Hi Jo!

If all GPs and pharmacies were primed to point people at the AFA website it would help enormously. I think some paper information would also be good, a 'quick facts' or 'FAQs' type thing, because there are still people out there who aren't connected to the internet...

Lis

[Loquitir]

I have experienced diagnosis and treatment of and for my lone AF at around 26 years old. I have experience of the services provided by the NHS and private health.

When I eventually seen the EP cardiologist privately the process became very clear. He said we need a long term management plan:

1. What AF is and what to expect? Diagnostics.

2. Future and potential treatments.

3. Medications.

4. Ablations and technological incremental changes to manage chronic AF to eventual treatment of AF episodes.

5. Monitoring.

6. Check ups.

7. Symptom management including co-morbidities

8. Psychological impact

9. Care and home support

I got no sense of any of the above on the NHS at all and was terribly confused albeit that was 15 years ago. By comparison I went to see Dr Wyn Davies and had both a management plan in place very quickly and all the knowledge needed to get on with my studies and professional life.

I recently wrote to the the Health Secretary asking for a personal budget for the long term management of my AF. I received no response.

The NHS ought offer individuals the choice to manage their AF medical care as they need it not how the NHS perceive we should adapt our lives around the NHS lack of adequate long term management of the condition and development of easy access AF clinics across the UK.

[CDreamer]

My GP didn't even know of your existence and he has a special interest in AF! He was delighted to know of it when I gave him the website details. Are you able to have a presence at medical conferences? Why didn't he know about it earlier? It took me 7 years to find AFA site and I just wish I found it sooner.

I agree with Lis posters/leaflets in GP surgeries, AND cardiology clinics and paramedics and pharmacies, they could target people from their prescriptions, good idea Lis.

FAQ on this forum for newbies because there are some perennials, my GP surgery has a TV showing ads and info for patients, I believe quite a few do these days so a slide or 2 for this.

Cascading information down from the medics has to be the way to go for the those not internet wise but I think you would have to simplify your literature for mass market, can't see many GPs printing out for their patients.

Basically all the information I gleaned about AFib was from the internet, 90% from AFA and this forum, occasional titbit from the medics, paramedics are the best.

[BobD Volunteer in reply to CDreamer]

We are currently working on a set of FAQs and those could be presented as a hand out for GPs and cardiologists but judging by the difficulty getting simple things like warfarin NOT asprirn across to those people it could be an uphill struggle.

Bob

[dedeottie]

For me the key is honesty from health professional s. If there are long waiting lists I want to know. If the G.P. is out of his depth with the latest info, I want to know. I want to know what their plan is for my on going care then or indeed if they have a plan. If I know all these things I am equipped to make personal decisions. I might not like the truth but at least I can do something to help myself. I too experienced a completely different approach when I was forced to pay for a private consultation.

[Hel1958]

My community cardiology team were great, much better than the acute trust team. They gave me leaflets they had printed from the Internet which also included website details, but more importantly they responded to phone calls when I needed them, and they always had time to answer questions.

[jennydog]

I believe that there is considerable confusion in the naming of this condition. Is it atrial fibrillation? Is it palpitations? Is it irregular heart beat? I know people who have been diagnosed with all these things. If it were to be properly described as AF then it would prove to be numerically huge.

[Hidden]

I was given diagnosis in 2005 saw consultant once and given no information at all, each time I have had a small stroke my GP just keeps increasing solatol and put me on Warfarin. I feel I have no info or follow ups at all. So any information would be good. thank you

[Buffafly]

I think the ideal is leaflets covering the essential info plus a nurse led clinic, as well as info online. I see an asthma nurse regularly as often as they think needed, and there is a set list of questions asked as well as an opportunity to discuss your treatment, problems etc in an unhurried session (20 minutes, wonderful!). Info online is great for the patient IF they have access and if they can understand it, but leaflets can be passed round the family (my husband is struggling to understand the difference between heart disease and AF) and possibly you could take a suitable person with you to a clinic. The BHF leaflets are very good and were my only source if information when I was first diagnosed.

My experience has been that cardiologists lose interest in you as soon as they discover there is nothing they can treat and of course GPs assume you are OK unless you complain. Looking at Loquitr's management plan made me laugh...

[Loquitir in reply to Buffafly]

Why laugh?

[Buffafly in reply to Loquitir]

Because the only one of the things on your management list that I have had apart from the diagnostics Is number 3! And a very speedy run through of my treatment options when I was in hospital the first time, everything else I know I have found out myself. This is partly my own fault maybe through not being proactive enough but when I could have asked questions I was too spaced out to think of any, the only thought in my mind was 'help!'. And don't mention my GP at the time who suggested I had psychosomatic symptoms or the one who insisted I take aspirin.....

[Loquitir in reply to Buffafly]

That's a pretty poor show. Did you change your GP and cardiologist?

[Buffafly in reply to Loquitir]

As I said, not very proactive but I moved house and found a much better GP, who was at least aware of the stroke risk but not aware that aspirin was not suitable for me (on several counts), as for the cardiologist - what cardiologist? I was signed off and the last next time I saw one was to check my heart before an operation. My latest contact was when I had a suspected heart attack on Tuesday, saw the cardiologist after the angiogram and when I asked if he had time to answer a question he snapped 'briefly'. AF is definitely a Cinderella condition I think.

[Loquitir in reply to Buffafly]

My experience in the NHS was ropy but that's just appalling. You can see any cardiologist on NHS choose and book.

I'd recommend heading to London or another major city and get referred on choose and book to a clinic recommended.

[meadfoot]

I have had AF since 2009 and was not given any information about the condition by my hospital trust, GP or anyone else. I am a very proactive individual and have researched everything myself. I found our local arrhythmia clinic,nurse, AFA association, treatment options, general information, forums etc by personal research.

I am a hospital volunteer and have seen excellent medical practice overall but not seen anything of note on AF in A&E, cardiac outpatients, on wards, general noticeboards, or any hand outs/fact sheets. There are the british heart foundation booklets around but you have to fish through them to find AF info.

Nothing whatsoever in my GP surgery or pharmacies. I consider that I live in a region with excellent medical care overall but in this particular aspect publicity is sadly lacking. I have just been put on the ablation list and was not offered any information about that either.

So in conclusion I would like to see handout literature and posters in A&E, Cardiac clinics, GP surgeries, pharmacies and libraries.

[sapphy]

I have had AF since 2010 . I went to my GP because I was breathless and having palpitations, he sent me to hospital and kept overnight. I was told on the morning round that I was being sent home and would be given Warfarin. Despite my numerous questions I was not told what was wrong, I was upset and very scared. I was told to attend the Warfarin clinic on the Monday. I spent a very bad weekend at home and by the time I got to the clinic on the Monday I was hysterical, crying and very scared. I was sent straight to their A and E dept .In resus, they had to turn the alarms off on the monitors as they kept on ringing non stop.They were trying to get me a bed on a ward, which was the one I had left previously. When I refused they tried for a bed on coronary care which luckily was available.I eventually got a diagnosis and had to start researching it myself. luckily I had internet access. I spent the next 8 days on that ward trying to stabalise my rhythm by medication. I was told they could only use medication due to my weight. After 6 months on these meds and being able to do nothing without feeling breathless, I requested a referral for a second opinion. I was lucky enough to be sent to another hospital and though it took a further 12 months was given internal cardio version. Despite asking repeatedly for information I got none. Warfarin started to become a problem for me 2 years ago and I was back to the clinic two, sometimes 3 times a week while they tried to sort my INR, it was becoming ridiculous. I could not arrange anything and asked my cardiologist for an alternative .I had already found out about Pradaxa and he agreed to prescribe it.

I think better education is needed for both Dr's and patients. patients should not be hitting brick walls when asking what is suspected is wrong with them it just scares them and makes their condition worse. access to information is needed both through leaflets and links for trusted internet sites. medication options should be considered, the pro's and con's of certain meds and other treatment options should be discussed.support groups, patient forum information should be passed on to allow an individual access to information and support from others in a similar situation.

I just feel its important to explain my situation as it shows the ignorance of some Dr's and how frightening the lack of information is for a patient.

[Buffafly in reply to sapphy]

You have all my sympathy, I have had AF diagnosed since 2001 and assumed things had improved since then but obviously not, can't believe it!

[sapphy in reply to Buffafly]

I just hope they sort this out and stop people going through the unnecessary stress, the lack of information and bad communication brings. I unfortunately could have added more but gave the edited highlights.

[dedeottie in reply to sapphy]

I have given up telling people about my appallingly negative experiences in the N.H.S. with A.F. because it gets me all worked up over again and thankfully they are now all resolved and I am at last happy with my care but worn out getting to this point. X

[sapphy in reply to dedeottie]

Its awful how we are treated and I understand the stress it causes. I am also happy with my care, just a shame I had to research and ask for my medications. Glad you are happy now with your care.

[R1100S1]

My initial diagnosis was by the nurse on my six monthly hypertension check up.

She said was nearly 100% sure it was AF, she told me the process to go through and not to panic. She also said don't google the internet or you will get some strange advice so look up on NHS site or this one

That being the case i was able to engage with doctor and consultant re diagnosis and treatment.

AF returned this autumn so with knowledge picked up by experience and this site I was able to ring doc and TELL him I was in same 24/7 AF.

So I believe I have a good experience with the NHS re my AF

PS

I am lucky my AF is of the 24/7 variety with only a few symptoms (which run in tandem with my asthma)

Good luck to all those starting on the journey.

[Loquitir]

I think it would be helpful if all GPs were required to provide AF diagnosed patients with a care plan and treatment pathway.

Perhaps the AFA could produce a generic one that patients can give to GPs setting out all the issues, options and care standards.

For example very few people know what their rights are under:

Choose and book

Treatment options

Monitoring and care

Personal health budgets

Similarly:

Equality Act and discrimination

Welfare

Social care

[JoJerrome]

Thank you so much for your replies, these are so helpful. We are working on a package of care to share and I would welcome your feedback as we progress. Thank you - determined to make a difference!

[Hidden]

It is pathetic in Australia that the major Heart Organization has no details on this condition if it is a lone condtion when I contacted them for information.

1. The most obvious one for me, would have been in the hospitals who have my records on hand, and initially this could be provided with hand-outs including basic information including relaxation as this is a frightening condition at the beginning, along with further information like methods used to try to minimise an attack, for example there is no nurse who has dealt with this condition attached to the hospital (This is a regional setting and hospitals are not large)

2. In a close community where I live it would be ideal if any of the heart groups (ie: heart attack patients) already formed in conjunction with the hospital, for lifestyle changes, could be informed that a number of patients with this lone condition should be treated as important enough to raise awareness and also money for research. This did not occur even when I tried to get this going at a local level. I was the only one, so I left after 4 months when nothing was done, I bet there would have been a number of patients with this condition either young or old with no other heart condition who could benefit from a group meeting of some sort.

3. It is of prime importance, that all medical professionals treating any patient with this condition should not dismiss the critical evaluation of an EP. This could be provided with names, addresses and contact details of all EP's and given to the patient.

4. Finally a description of the aftermath that a sudden attack could effect (like lifestyle and social interaction) which could occur from time to time, as most of my friends and family do not have any idea.

[Geordielass]

Diagnosed in 2010, I picked up leaflets (wasn't offered them!) both from BHF and AFA. Also went on the Net. My GP surgery has no leaflets/posters for this condition.

I take a form of Warfarin, so attend an anticoag clinic for NPT, but receive no info/support there. The clinic displays no posters/leaflets.

There is no anticoag support clinic, nor any AF support clinic in my area (30 miles from London)

I am desperate for something like the asthma clinic/nurse; someone I can talk to about concerns/symptoms/progress/treatment etc. Someone who can give me info at the same time as making me feel someone is bothered about what happens to me.

Patients need to feel that they have some control over their wellbeing. Having information and support leads to more control.

I need a number to ring when I have symptoms, so that I can decide on whether to go to the GP, or g to A&E, or call an ambulance, or do nothing. I realise that this isn't quite what the original question was about, but specific one-to-one info at the point of an episode would also help, and could lead to less hospital admissions.