I feel that my 21 year old daughter is being let down by our local cardiology services and we are becoming increasingly Worried about her health. She has a history of partial ventricular septal defect as a young infant that was subsequently repaired however led to complete heart block requiring the insertion of a pacemaker. Fast forward to the last few years, my daughter has had episodes of syncope, with a recent episode causing her to turn blue and stop breathing, an episode which our hospital does not believe happened. She has been diagnosed with bifascicular block however we have recieved no help with this diagnosis or a treatment plan. The pacemaker My daughter has does not work anymore and they feel an operation to replace it would cause more damage to the valves and would be a dangerous operation. She experiences daily headaches, dizziness, sickness swelling in her face, shortness of breath and is constantly hypotensive with readings around 60/80 on a good day. We have been told numerous times to just continue to push fluids and to ‘lie down’ if she feels faint. We are extremely concerned about the care we are receiving and know the Implications and outcomes of bifascicular block that has progressed to low blood pressure and syncope. I am just out of options with what to do now. We had previously sought a second opinion at Glasgow jubilee however we have been informed That the consultant is on sick leave and that services are Tight. Everyday I am having to watch my daughter deteriorate without answers or direction from those we are supposed to trust and I feel it is because she is too difficult to treat.
Extremely worried about my daughter - British Heart Fou...
Extremely worried about my daughter
I’m so sorry to hear about your daughters experience, it sounds absolutely terrible and I can understand what you must be going through, my son is 20 and needs a valve replacement and it’s bad enough going through that when he’s getting excellent care. If I was you I would go back to your gp and speak to them about it and tell them you want a referral to a different consultant, my gp has told me in the past you can be referred to a hospital out of your area if necessary. Good luck, I hope you eventually get the care your daughter needs and deserves.
Thank you so much for your lovely reply and sorry to hear about your son, I hope he gets the replacement he needs soon! Yeah I was thinking about going back to the gp I just sometimes feel like they stick together! The level of care we have in Aberdeen is appalling. I think I will definitely do that though. Thank you so much again.
you have the right to see a specific specialist in any hospital- be a bit pushy if you are not too stressed, all the best Ron
Hi Rachel
If you were looking for a second opinion from the Jubilee, I take it they are not the Hospital that have been looking after your daughters first line care ? You could try your MSP if you are in Scotland it does work especially at an Election Time !!
I don't think anything comes under the banner " to difficult to treat " you would be told up front if that was the case, maybe not with your daughter present but you have a right to be informed. GP can push Consultant's if they think the care you are getting is not up to standard persevere.
regards
Hello thanks for replying to me! Yes our hospital is in Aberdeen however we went to Glasgow for more advice as that is where she had her surgeries when she was younger. Yeah I just get that impression as the answer is that she really needs a new pacemaker however the old one is embedded in her abdomen. we had to fight to even find out about the new diagnosis of bifascicular block and what it meant! It’s so scary. I will definitely look at speaking to my msp if you think that will help ! Thank you again!
Hello Rachel
On 4 visits to Cardiology at the ARI I saw a different Cardiologist every time. When I was told the urgent wait list was 16 weeks I went back to see my GP, she blew her top and I was seen within 3 weeks. I did also e mail Margret Watt and got an apology and the promise to look into the delay. Don't want to get political but NHS Grampian has a lot to answer for.
I totally understand where you’re coming from! And really helpful to know you’ve had similar issues with them. We just feel we have never seen a really good cardiologist in Aberdeen that is willing to take her case seriously and not avoid her as she feels like a bomb!
Going to gp seems to be a running thing so maybe that’s the best route just feel like it might be a bit hopeless! It’s also hard when my daughter isn’t too worried about things so likes when she is dismissed! She’s a busy preoccupied 21 year old who just refuses to see the seriousness of it all.
Hello and welcome to the forum! I do not know if it is an option to go privately. An initial consultation is around £200 - £250. I did this in the early part of my cardiac journey when I was told the wait for an angiogram was four months! The consultant was very good, explained everything and adjusted my medication which helped significantly with the angina I was suffering. A few days later he performed an angiogram which showed four narrowed arteries. It was then back to the NHS but at least there was a roadmap! Not knowing is very hard particularly with one of your own.
Hi Michael!
Thank you for your message. No private health was really the path I was looking at going down and was reading into it last night. I saw most consultations were around £250 mark but didn’t know how much could be added on to that! It sounds like it was a successful path for you though which is reassuring. They keep just doing ecgs at our hospital and no other tests to look at the actual structures as they say radiation etc has its risks when you are young.
Rachael, I am not sure whether you are aware, but there is an ultrasound version of ECG. I had one prior to sign-off from our local cardiology department. It will of course depend on the equipment that they have at Aberdeen or wherever you end up going.
It is sad to hear of one so young as your daughter having this problem. I saw quite a few cases of young people when I was in Papworth. I hope she receives the care she needs very soon.
I am very sorry to read about your daughter's health with regard her latest symptoms.
I would definitely go back to your GP and demand to see another Cardiologists on the NHS at another Hospital. The NHS has a duty of care to treat your daughter. And you could see a Cardiologists privately and ask them what you should be asking for on the NHS. I do this alot, I too have had alot of problems with getting the right medical treatment on the NHS for my condition which is un-usual as it is more cellularly based which affected my heart muscle cellularly not structurally, so I went privately and then found a good Cardiologists on the NHS that can support me too with his advice too.
Keep exploring. The NHS is here to help us. It has many faults due to the system but compared to other fee based health-care system it is fairer to us all, it is here to help us with our health at whatever stage of life one is.
Have you thought of being referred to a Heart Hospital in London - the Brompton or Great Ormond Street Heart Unit? I got referred to a London Cardiologists Unit myself when I wanted to see a specific Cardiologists who has a bit of any idea about cellular/mitochondrial dysfunction - I researched which Cardiologists before hand and was strict with my GP to refer.
Hope this helps. My best wishes.
So sorry to hear one sooo young suffering so much. I live in Ireland and feel like I have very little support for a rare heart problem here but at least I was 52 before the major problems of syncope started to haunt me. That symptom alone is a nightmare as you cannot lead a normal life. Standing in queues etc is a nightmare. I would leave no stone unturned. Do whatever you have to do. Contact your MP's. Promote awareness by newspaper interviews, radio etc. wish you lots of luck xxx
It really sounds as though you are not receiving the care that your daughter should be entitled to. I would ask for a referral to another hospital. The one that I can personally recommend is Papworth.
The new hospital is the only one in the UK that has received an Excellence grading in ever category.
Cambridge is a long way for you to travel but I am sure you would be able to have telephone discussions to establish how they could perhaps help your daughter prior to making arrangements. They do also have a private wing if that is the route that you are considering.
I wish you the very best in whatever you decide. Do keep us all updated on your progress.
As well as trying to get her GP to move things along or go elsewhere I would put a complaint in through PALS at the hospital. If they don't know how to treat her,they should send her elsewhere where there are more experienced cardios.. PALs can speak directly to the head of cardio
I do not know the answer to your worries,but I think you should keep at the doctors and make nuisances of yourselves till someone takes notice. Take I will be thinking of you and your daughter.
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