7 year old, stopped breathing, ambulance to A&E ref to pediatric cardio Consultant in 6 weeks. Appointment arrived 9 months. What to do ?

[Davew10]

My 7 year old grand daughter suddenly collapsed and stopped breathing, after 24 hours in A&E she was sent home , letter says systolic murmur upper and lower sternal edge.. bradycardia, , and ECG RBBB. … to be seen by pediatric consultant within 6 weeks. Care plan. If it happens again, phone ambulance..

parents and grandparents at wits end.. appointment arrived today for 9 months time..

Can someone explain what the above letter means.. They mentioned a hole in the heart, but have given no advice on what she should do while waiting for an appointment, let her carry on as normal ? Keep her clam and quite ? We of course will call the hospital and try and get appointment brought forward but left completely in the dark as what we are dealing with, or what to do in short term..

Any help and advice please ?

[nanyonga]

RBBB means Right Bundle Branch Block. which means one of the vessels is not working properly.

[Clerkenweller]

I can’t imagine how anxious you all are. Others might explain the terms as Nanyonga has. I fear that the delay in the appointment is a reflection of the state of the NHS. All I can suggest is that you need to hassle. The starting point is your GP. You need that person to be onside and pester the specialist cardiolgists to try and improve the the date. If all else fails if you are lucky enough to to have the funds go privately to a cardiologist. Thoughts are with you.

[Mentdent]

This is typical of NHS bureaucracy. Start pestering people. GP first. Don’t take no for an answer. They are busy but not that busy.

[Sunnie2day]

If this were my grandchild (number six expected next week ) I would do two things - ask the GP to chase up an appointment within the six weeks saying if the appointment is not moved forward with urgency I will advise the child's parents to make a formal complaint.

Second thing - GO PRIVATE - immediately even if I or the child's parents have to take out a loan to do so. Most private consultants will do the initial exams and tests and then place the patient on their NHS list.

I went private in 2019 owing to delays (and this was pre-Covid!) and have never regretted the £1000 cost (approximate, it came in slightly less than), when my private consultant saw my test results he put me on his 'urgent' NHS list and I've had nothing but top-notch NHS care since. But if I'd waited for the NHS booking, it would have been months to be seen and treated.

I was your granddaughter 60 years ago whilst being brought up on my expat (Scottish) parents' cattle ranch in the USA. As a consequence of rheumatic fever I was left with a lifelong heart condition (now morphed into more than just the one) - but owing to quality medical care I have had a 'near-normal' life including delivering two healthy children, enjoying several 'extreme sports', and 12 years in a sea-going military service. I had a somewhat biggish wobble in 2019 but am doing well enough, all things considered. Aged 65, I'm content with 'well enough'

Your granddaughter might well have the same prognosis as mine and the same high quality life. I owe my life to private medical care in the US then and now here home in Britain - my wobble might have ended my life had I not taken money from my savings and gone private when faced with the NHS delay.

Please keep us updated on how she gets on. I'm going to follow you so I'll be email-notified when/if you start a new discussion.

[Mpove]

Ring patient services and tell then u want to be put on the cancellation list, in my experience ringing gp did nothing thru just told me to go to pals. I went private and then 2 days after that appointment I've ended up with a cancellation apt for my local cardiologist, I've now ended up under 2 hospitals now both NHS as the private cardiologist saw I paid myself and with the amount of tests I needed he referred me to his NHS clinic. I have rbbb and I also collapsed in May but didn't stop breathing so definitely not as serious as ur granddaughter. Get her a alarm or something so if god forbid it happens again then people will know what to do x

[paw1]

I felt so sad to read this. Of course it must be so disturbing for your family. Perhaps ring your GP, the hospital as you say, but also try the BHF cardiac nurses help advice telephone line. Many people recommend them on here.

[lilliput]

I feel angry on your behalf. Awful. But ditto phoning the BHF nurses. Last thing you will feel like doing is pestering but would quote the 6 weeks and above poster said, threaten to complain if it's not upheld.Knew someone, I'm sure there are many, who really played the system. The NHS isn't free we pay NI in one way or another. Pester power is easier if you are not seriously ill,(shoot me down but true) and have the time, want the benefits

Plus people pester via 111 to get social care. Person I'm thinking of has support from 3 different charities but still insists on home visits from doctor, she got nurse, for a hospital visit. Called ambulance and me at 3 am. 3 ambulance call outs. Stomach upset.

Add mental illness, drug abuse which perhaps should have a dedicated ambulance force, NHS of their own. Enough charities tbh

Just awful that a seven year old should be in the middle of all this

[lilliput]

Know it is difficult to get disability payments, know some people are refused and die. Ditto social care. Just aren't enough resources. Think children should be an absolute priority

[DiggyDoggy]

As someone else has mentioned, if you can afford it go private. It's not too expensive (maybe £150 for a consultation), and they will most likely greatly put you and your family at ease - since waiting for weeks is horrible to go through.

If the consultant wants an ECG it is normally done on the spot, and I think it costs around £50.