Hi everybody. I have been a member of health unlocked for some years and have read some really interesting posts. All members seems to have a team of doctors and also knowledge of their blood results and really know what’s going on with their treatment.
I have Lupus SLE, Sjorgrens disease, osteoarthritis, osteoporosis, sticky blood and fibromyalgia.
I’ve no idea what severity of my diseases even though I suffer constantlly. Not none doctor has sat with my and said you have mild moderate or severe lupus or discussed blood results and things I can do to perhaps help me a little. Am I being unreasonable to assume I should have a team of doctors who keep me informed and be more joined up ?
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rafael
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Hi raf, many of us here have a verity of doctors, and many of us have few to none. You should be informed, and attended to, with all your conditions, You have every right to know all you can about your health, symptoms and care. I would start with your GP, call them, have a list of questions, and symptoms and concerns, and request a full , understandable printout of your health You have a right to them,. Ask for an appointment to go over all these important questions with your GP. It is seemingly impossible for you to manage your care, without some clear directions. We here all know how lost this feels. I have several of your conditions, and still at my age, still have questions to GP, with little knowledge or answers. With knowledge comes better understand for you, then you can do some research on your own. Boy I could go on and on. Please keep posting, and know you are not alone, call that GP, get that appointment, and keep asking questions to them. Bless you, The Stormy Sunshine 🌻🤗
Hi rafael, just to reassure you, you’re not alone. I have been having appointments with rheumatologist once at year (mostly phone calls) and that’s only when I chase them for an appointment, and to be frank. I feel it’s a waste of time, the letter he produces to the GP are not consistent with what was discussed. I also apparently have PBC, diagnosed by elevated bloods, saw gastroelogist who just prescribed medication and now have a 2 yearly phone call. Optometry are once a year because of hydroxychloroquine.
My diagnosis is lupus sle/sjogrens overlap, sticky blood( but not APS) still havent worked that one out 🤷♀️fibrosis of the lung (one consultant diagnosised it while another said no) GP won’t take it off records as says, scarring doesn’t disappear. PBC, arthritis and because I have lots of respitory problems (lungs are good apparently ) GP has added on my records mild asthma/COPD because they don’t know what to call it and then theres always the ones I forget to mention because I’ve had them since a child, being hyper mobility and lymphodema.
But hey! I’m still alive and managing to live a reasonable life 😉
I’m surprised you don’t get a copy of the letter sent to your GP by your consultant. I am always counter-copied when a letter from Rheumatology containing what was discussed during consultation is sent to my GP. In the same letter blood results are listed and all prescribed drugs are listed. So it is possible to go over old letters to compare results. Our Rheumatology dept also has a Helpline so any queries can be voiced there. If your hospital doesn’t have a Helplne for Rheumatology perhaps you could ask your GP for advice on how to find out more. With all your conditions your GP should be aware of them and be updated each time you see a consultant so perhaps speaking to them first is the best course of action. Good luck.
A team is great if it really is a team. If it's just a number of specialists (excellent though they are) who don't interact then it's not good. Addenbrookes (Cambridge) use "my charts" which enables both me & my GP to see post outpatient letters & test results.
Morning, your response and comments re lupus centre’s of excellence only benefitting the staff etc concerns me. I have lupus, I do not work for the NHS., I am not clinically qualified. Yes we do need to improve the service to all patients but our NHS is struggling. The Queen Elizabeth hospital in Birmingham has a wonderful rheumatology and lupus team. It is a pioneering Lupus Centre of Excellence. The nurses and consultants go above and beyond is my experience. But nothing is perfect. It is a balance. If unhappy with your hospital service talk to PALS. Lets be honest, the staff whatever level are human beings too. Most of them at breaking point due to pressure. So please be kind and considerate when putting out a message to all on this platform. Maybe consider how much your care would cost if you lived in the USA. We are very fortunate. Please enjoy life to the full and have a great day!
I am thankful for any care I was merely asking the questions to fellow lupuies. Thanks for your comments though. Your answer is valid in some counties.
rafael I think what you are describing depends very much where you live. Most large cities have large Hospitals with centres of excellence as someone has mentioned. That’s where many different specialties can come together at the same time - well that was the theory! In reality you mostly see the main specialty that is responsible for the condition that your being sent there for - say Lupus, and then if they want you to see somebody else you would have to come back to see that person on another day. The reality is that as the NHS is so stretched you can be waiting months to see people and get results.
Your GP (and you) would be sent letters detailing your consultation with test results. Therefore if you want to be referred to one of these centres you need to ask your GP to set this up for you as I’m assuming this has not happened. It is your right to ask for a second opinion from your GP but depending where you live you may have to travel to a centre of excellence because they are not in all town hospitals.
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Doctors and their lack of information !!!!
Doctor appointment next week - worried.
