Frustrated

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Frustrated

Postby rob4001 » Thu Oct 24, 2013 1:51 pm

Hi

I live in rural Wales and travel to Guch clinic in Cardiff about 3 hour drive. I have had Pulmonary valve stenosis and had OHS aged 3 in Liverpool where I grew up. Now ripe old age of 40. I suffer from Extremely severe PVR and have an enlarged RV apparently on the boarder line for valve replacement intervention. After a recent visit to Cardiff I was told they would like to compare my previous Cardiac MRI with a new one. Problem being the current waiting list going on past experience is 8 months for the scan and a further 2 for the report. Only one radiologist can report the Cardiac MRI currently.

I have no problem with any of the staff there they have all been excellent. The problem obviously is the waiting has left me frustrated and anxious :(
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Re: Frustrated

Postby Mustard » Thu Oct 24, 2013 8:54 pm

Good to see you onboard here - sounds frustrating, have you attempted pushing harder to bring it forward?
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Re: Frustrated

Postby rob4001 » Sat Oct 26, 2013 9:35 am

Hi Thanks for the welcome & the reply. I haven't pushed as such I just asked the question of why so long. The answer I was given was they have one radiologist who reports his speciality is vascular intervention so imagine his role is split also.
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Re: Frustrated

Postby vicki » Sun Oct 27, 2013 10:41 am

Hi Frustrated,

No wonder you're frustrated! We had a similar problem in Glasgow in the past- but things have improved. My experience in Scotland with the devolved NHS is that it's actually easier to get involved in politics, and the politicians and service managers do not like their service to be 'less good' than an equivalent service in England.

What you could do is find out from the hospital how long the wait or MRI is going to be, how long the wait for the report is going to be and then start telling people- if it's a two year wait for a report then it makes the MRI meaningless- a waster of expensive resources I- your condition might change dramatically in two years, so start telling people about it- tell the service managers at the hospital, tell the health authority, tell your member welsh assembly. The Scottish Governments have various groups- Cross Party Groups- on heart and stroke (for example) it's really easy to find out who sits on these groups- tell them, because I think a two year wait for a result to be reported is unexceptable.

Good luck!

Vicki
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Re: Frustrated

Postby elizabeth » Sun Oct 27, 2013 2:44 pm

Er, Vicki, he said 2 months not 2 years.

Rob, apart from that(!) Vicki has a point about an alternative way to progress stuff (though talking to politicians isn't everyone's cup of tea; it's certainly not mine). Another thing you might ask is whether they could send you to Bristol for an MRI if they have more capacity. Or - if you have cover through work or anything - could you get it done privately?
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Re: Frustrated

Postby vicki » Mon Oct 28, 2013 5:54 am

Good grief! How did I misread that :?: :?: :?:

But you can still chase things along as Elizabeth says- twitter's great for that sort of thing if you're on it.

Hope you don't have too long a wait.

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Re: Frustrated

Postby Paul Polo Willgoss » Mon Oct 28, 2013 5:45 pm

Hi,

There's a couple of less confrontational ways... First up, just give them a bell and explain how you're feeling and ask why you're being delayed... Reminding them that you are a real person can help. There should be a PALS set up at the hospital, these are the Patient Advice and Liaison Service (http://www.nhs.uk/chq/Pages/1082.aspx?C ... goryID=153) who should be able to take things forward without a formal complaint or anything else.

Hope you get some resolution soon

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Re: Frustrated

Postby Mustard » Mon Oct 28, 2013 11:23 pm

Paul Polo Willgoss wrote:Hi,

There's a couple of less confrontational ways... First up, just give them a bell and explain how you're feeling and ask why you're being delayed... Reminding them that you are a real person can help. There should be a PALS set up at the hospital, these are the Patient Advice and Liaison Service (http://www.nhs.uk/chq/Pages/1082.aspx?C ... goryID=153) who should be able to take things forward without a formal complaint or anything else.

Hope you get some resolution soon

Paul


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Re: Frustrated

Postby rob4001 » Mon Jul 28, 2014 3:06 pm

Update: Waiting list now 14 months! No PALS service in Wales. Might just end up moving or paying for MRI privately which is what the government want by decimating the health service.
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Re: Frustrated

Postby aghorner » Tue Jul 29, 2014 8:55 am

Hi,

Seems to be a problem with MRIs, I'm a patient at Leeds and its a 12 month wait too. I also have TOF and am being evaluated for valve replacement. But due to other complications they're trying to decide if the benefits outweigh the risks. In the time I've been waiting for the MRI I've had one Cardiac Cath, and a cardiac CAT Scan, waiting time for both of these was around 6 weeks.

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Re: Frustrated

Postby rob4001 » Tue Jul 29, 2014 9:14 am

Thanks for the reply. Sometimes its easy to think I'm the only one waiting for so long but clearly I am not. Last time I had a scan in 2011 it was 8 months. So waiting list has practically doubled I wonder if it is due to increased demand of MRI or other factors as well. It would be good to hear how long it is for other people. Seems the High demand and low availability of Cardiac MRI is a problem across the UK.
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Re: Frustrated

Postby Tricky Dicky » Mon Aug 04, 2014 1:52 pm

You could try contacting the GUCH nurses at Bristol Heart Institute..............
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