In response to a question I got this week about dealing with doctors and other healthcare providers.
The best way to get the most from your healthcare provider is to be organised and well informed. Arm yourself with as much information as you can, but don't just read the stuff you find on google. You can access thousands of medical journals online for free (there is a link on the "Gastroparesis" page to a great free site) and you can try searching google scholar if you feel good enough to wade through the jargon that is lol.
Dealing with Dr's can be very difficult, especially if you feel intimidated by them. When you are ill you feel especially vulnerable and more likely to forget what you want to say, or in a hospital situation, feel too intimidated to to stand up for yourself. So ALWAYS take someone with you to appointments. Make sure that person is also well informed about your condition and what life is like for you. They will often hear things that you don't take in and can stand up for you when they see you backing down. Make copies of any letters and test results you have and keep them in a file to take with you if you end up in hospital or when meeting new healthcare providers i.e. dietitians. You never know when you might need them and it could save you a lot of time, especially when it comes to explaining your condition to someone new.
If you don't have a good relationship with your consultant and you don't feel they are doing the right thing for you, its perfectly alright to seek a second opinion. Go to your GP and for a referal, it is a good idea to do a little homework before you do this because they will most likely just send you to the next nearest hospital. It is hard to find motility or EDS specialists but the support groups are now an excellent way of finding tried and tested GP/EDS friendly doctors! Be prepared to travel if you do find a good one, it's worth it, but expect long waits between appointments and you also need to think about who is going to care for you locally if/when you need immediate care.
The motility experts I have come across so far here in the uk are:
NHS.... Hope Hospital Manchester
NHS.... Durham University Hospital
NHS.... St Barts and St Thomas' London
NHS.... The Royal London hospital
NHS.... Salford Royal
NHS.... Royal Free London
Private.... Princess Grace Hospital London
Paediatrics... Great Ormond Street
What do you do if you need medical treatment or advice out of hours?
Obviously... if there is something dangerously wrong... you must go straight to A & E!
However A & E is not usually the best place to go with gastroparesis symptoms but sometimes it is necessary. Don't expect them to fully understand your condition, that doesn't mean they can't help you, but expect a long wait while they try and figure you out. Here in the UK, I find it much better to use the out of hours service, you ring your GP and there will be an answer phone message with the phone number for their out of hours service. Then you call that number and they will arrange to see you or give telephone advice. If they ask you to go and see them you won't have to wait as long, and they can arrange direct admission if needed.
Never let ANYONE, Dr or otherwise, bully you into something you don't want. At the end of the day, it's your body, your life and you have to live with it!
When you need someone who understands...
Patient forums are an excellent way of sharing information and experiences with with people who have faced similar situations to yourself... I started my own support group on facebook to try and provide a support network here in the UK. You can find us at www.facebook.com/groups/GIFTuk
Of course there are international groups too such as inspire and G-PACT. There is a great community on facebook and twitter, not to mention all my fellow bloggers. So please don't feel alone, there will always be someone there to help you along the way, all you need to do is ask xxx
Here are some links to GIFT and other pages I created x
GIFTuk Facebook Page
GIFT support group
Living with Gastroparesis & EDS