GP won't refer me to specialist!!

[chrissy99]

Hi, I have ACHD my symptoms worsened in May after my latest Atrial Flutter episode, resulting in me being put on the ablation list. As I have never seen a specialist in congenital heart disease all my adult life, I asked my GP if she would refer me as my symptoms are worse and I'm worried about having an ablation, she told me to ask my EP secretary which I did....she told me to ask my GP...back to the GP she said she would write to the EP to see what he thinks!! does anyone know if I can insist on seeing a specialist before having anymore procedures...really worried Thanks.

[Milkfairy Heart Star]

Hello chrissy99

Do you know about The Sommerville Foundation a support group for adults with congenital heart disease?

I suggest you contact them for more help how to access the care you need.

They have a helpline.

thesf.org.uk/our-community/...

The funding for adult congential heart disease comes directly from NHS England.

The Cardiac nurses on the BHF helpline I am sure can help too.

bhf.org.uk/informationsuppo...

I hope you get the support you need.

[chrissy99 in reply to Milkfairy]

Thanks for the information Milkfairy... I have tried to get in touch with someone on the Somerville foundation, no luck yet but will keep trying. NHS England states it is vital that all ACHD defects whatever the level of complexity are seen by a specialist at least once. I did tell my GP about this, but because I am already under a cardiologist EP. she didn't want to go over his head...

[Milkfairy Heart Star in reply to chrissy99]

Hi chrissy99

I hope you can speak to someone at the Sommerville Foundation fairly soon.

Perhaps also make an appointment with your GP and ask them to look at the Sommerville Foundation website.

I suspect your GP is unaware of the recommendations for the care of adults with congenital heart disease and your GP can refer you and so can your electro physiologist to the appropriate specialist.

You are entitled to ask for a second opinion from a Cardiologist who is an expert in adult congential heart disease.

All doctors have a professional obligation to allow you to make an informed choice about you care. The NHS Constitution discusses our rights and responsibilities as patients including this obligation of Shared decision making.

You are your own best advocate!

[chrissy99 in reply to Milkfairy]

Hi Milkfairy,

I have been in touch with PALS today, they recommend I get back to them if my EP won't refer me, so just waiting now for his response.

I think , I thought my GP would just know about the recommendations, but she obviously doesn't so I will have to keep on fighting....even though I can't be bothered!

Thanks again for the great advice.

[Milkfairy Heart Star in reply to chrissy99]

Hi chrissy99

I hope you are able to be referred without too much further hassle.

I acknowledge the feeling of getting tired of having to what feels like a constant battle to access the care not only you desire but is recommended by NHS England.

Good luck and do tell us all how you get on.

[chrissy99 in reply to Milkfairy]

will do, thank you.