AF pathway query

[rosyG]

After my diagnosis with AF in August, the pathway of care was as bad as many of you have recorded on this blog!! I have been involved in our local hospital campaign for some time so have been in contact with the chair of our CCG. When I spoke to her about the splintered pathway she promised to set one up! I have received an e mail today asking me to be the patient input into this. I feel able to tell them about the anti-coagulation issues ( I asked my GP to put me on warfarin!!) and self testing, costs of strips where prescriptions are limited, the issues with test results being scattered and not acted on, and waiting times for referral, GPs not knowing choose and book. However, I have contacted the AF association office asking for info. , and would ask you all to contribute, to ideas re the longer term pathway which you know much more about than I do. I hope to make the talks on Sunday in London, will try and get carnation!! so if anyone wants to give me ideas there- or just suggestions here please. It will help a lot of people in our area who are not getting the correct treatment at present. Many thanks Rosemary

[BobD Volunteer]

Hi Rosemary,

The All Party Parliamentary Group on AF have been working to establish a national patient pathway. I know that I was involved with a wish ;list a couple of years ago so best to talk to AF Association (Jo Jerome maybe) so that there is some consistency in approach. What we don't want is even more diversity but well done for getting involved. Unfortunately I can't get to London for Europe AF on 24th but will be thinking of you and know that Ian will look after you.

BobD

[rosyG]

Thanks Bob- yes I thought it wise to ask the Association - hoping they will give me some materials on Sunday. I will run things by you before submitting anything if that's ok,

best wishes

[Hidden]

Sorry to be a bit thick, but I don't know what a pathway is! I assume it's the route you go along to get to an end result/treatment?

If that's right, then I will add that it is a path where they haven't finished the hardcore yet, and the tarmac hasn't been ordered. A lot of GP's position can best be described as standing in the middle of the unfinished path, trying to stop you going any further along it, or sending you off in another direction. With arrhythmia's, my experience is you need to be in control and take things into your own hands. This forum is worth far more than any of my GP's can bring to the table at the moment.

I've just come back from my EP. I told him I hadn't taken the Bisoprolol prescribed by my GP, he said "good, it's the wrong one for you". So thanks to you guys and the Patients Day for that bit of knowledge, which I wouldn't have even heard about were it not for this forum, and I'd still be taking completely the wrong pills.

Speaking personally, once I've got into the hands of the professionals at cardiology, the path does seem to be tarmaced if a bit slow. But the 18 weeks maximum from referral to treatment, as promised by the NHS, is not happening.

On the other hand, if my understand of what pathway means is incorrect, then please ignore everything I've just said and I'll go to the back of the class and put my D hat on .

[rosyG in reply to Hidden]

No you are spot on Koll and I will make use of your metaphor re tarmac etc when they ask me for input!!

[Hidden]

Does the same apply to Wales? Doctors here seem to go their own merry way without the same targets or even a hint of a pathway...

[rosyG]

I have just spoken to Jo at the AF Association and she said very few CCG's have got proper pathways yet and was pleased ours are looking at it. She will send some info for me to use about what is being developed nationally.

I will cut and paste for you if possible so you can send to the chair of your local CCG as they might then get organised!!

[Mamamarilyn]

Hey, come to South Warwickshire, they seem really sorted here!

[rosyG in reply to Mamamarilyn]

Do you want to make suggestions for our CCG Marilyn? All ideas gratefully received!!

[Mamamarilyn]

I was diagnosed with high-level AF by the triage nurse in our Surgery and sent to A&E. I was assigned to a consultant and was home the following day, back in NSR. A few days later the practice rang me, asking me to come in. The GP had received a copy of all my hospital details and went through them with me, asked me whether I had received guidance booklets from the BHF, which I had. She let me know that she was available to me at any time, that I didn't have to wait for an appointment, I could ring her. She apologised for the fact that I would have to return to hospital regularly for Warfarin checks as they had no nurses with that qualification at the moment. Not a great problem as the hospital is only 30 minutes away! She asked me how I felt 'in my head' and we discussed anxiety which she understood but didn't feel should be medicated at this time. I was more than happy with this as I meditate regularly and practise yogic breathing, which helps.

At the end of August I was admitted again for 5 days and again, copies of hospital details were sent to my GP and to me. I saw a different consultant on the ward but she was terrific and said I could come to her on-ward clinic if I had any concerns. It was decided that I should have an ablation but this has been postponed because I'm back in NSR for the moment.

I cannot fault the care I have received via the NHS. If there is one observation I would like to make, it's that it would be useful to have more support re diet changes and psychological effects related to AF.

[Mamamarilyn]

P.s. Had an outpatients appointment with my original consultant on Monday and he suggested changes to my medication. He gave me three options, explained each one clearly to me and gave me time to ask any questions and to consider each option, so that I really felt involved with my treatment.

[rosyG in reply to Mamamarilyn]

Thanks for this Marilyn Did you have an echocardiograph and any other tests?

[Mamamarilyn]

Oh yes. I have had so many ECGs I've lost count and one echo prior to my first outpatients appointment with the cardio.

[Hidden]

My experience in Sutton Coldfield, West Midlands was of similar quality to Marilyn's in South Warwickshire. I was straight into hospital, even when I went to A&E as soon as my wife mentioned heart to them, I was taken straight round the back avoiding all queues and they put me on an ECG and stayed in hospital for the next 8 days till I was fixed with drugs. I could not complement the NHS in Sutton Coldfield, including the GP's, enough, first rate. Had 24/7 monitoring and echos.

In Shrewsbury, however, I have been to the hospital twice and I hope never again because it would scare me stiff. First time, I had what I assume was a series of huge ectopic beats that made me gasp. I didn't know what it was so assumed it might be a heart attack of some sort. Phoned my GP who booked me into the hospital by phone. I arrived and booked myself in, and was sent to a waiting room where I waited for 1.1/2 hours. They kept me in for a day, did a blood test, looked at my history of AF which I told them about. They did not even do an ECG or anything else other than feel my pulse once or twice. My GP put his head in his hands when he saw the report.

Hope that info is of use!

[rosyG in reply to Hidden]

yes it is thank you. I will bring this up when asked for patient input .