Getting a second opinion
HAE is a very rare condition and patients should ideally be under the care of a HAE specialist in an accredited HAE centre. This will help to ensure that patients can achieve the best possible management of their condition.
A HAE patient may seek a second opinion either from a GP or from a Consultant if there is a problem with communication or if the patient is experiencing difficulties in accessing treatment in accord with NHS England Service Specifications. You do not have a legal right to a second opinion, but it is unlikely that your doctor would refuse to refer you.
Problems with communication
As a first step it might be good to try to resolve communication difficulties with your doctor. before considering a second opinion.
You might make a list of things to be clarified, and consider taking someone with you to help in achieving an understanding of all the issues involved.
Your doctor should provide you with clear information about your condition and treatment options, and he should also provide you with written information if this is available. Your concerns should be listened to and you should receive the support that you need.
Referral to a second consultant
If issues cannot be resolved through discussions with your consultant, you will need to ask your GP to refer you to another HAE Specialist in a centre that has experience of treating HAE patients.
Please feel free to contact HAE UK for information about Specialists with an experience of HAE management.
The following websites give more information about obtaining a second opinion.