Hi all my friends I'm having difficulty on my Madical condition with scleroderma with raynouds with kidney lots and others more problems with oesophagus which is some time bleeding from my mouth when I splitting ! And get breathless and chest pains I Ben compliance to my GP about my chest pains and breathless shine long time ! As I'm having more difficult shine last 2 week which is bleeding from my mouth when I split ! which I did not butter be coz when ever I ask GP I'm having any kind off my body problems my GP just keep saying me ( be coz you got scleroderma chronic diseases ! so many things connect on your body ! ) that's ways you having all different different kinds of problems ! But still I rings my GP he check and he rings hospital and arrange to go with my own transport be coz hospital don't provide transport ! So GP sand me to CDU unit. I want with my partner who's also disable ! with my 2 children one 12 years old and one is 7 years boy. Gerls who's posh in my wheelchair from car to CDU until as we handover all my Madical condition report to Maine desk which my doctor gave to me to handover to hospital doctor. after nurse check my all details she check blood parser check ecu and take my blood samples and after take my chest X-ray. I'm still on the wheelchair ! After two hours my partner ask nurse how long to wait be coz his tiered on wheelchair his gating so much pain ! So please can you confirm how long. ! nurse told to my partner sorry they're is no time limit ! After 30 or 40 minutes I'm not sure but my partner asked again then nurse said you are next. ! after some more time my partner asked other nurse she said after 1 patients but I can ask Dr. If he can take you ! I side please I'm not comfortable on my wheelchair more than 3 hours please if I'm okay late me go home ! So she said no wait I'm confirm to DR. ! I'm Still waiting for doctors ! Nurse Staff swift change ! Again my partner asked new staffing nurse then after some more time After (A) doctor come to me and he told me to I check your Report and look to me you got problems on your oesophagus probably so you need to see your oesophagus DR. ! But still I need to ask my senior DR. (B) which he take time to see you about 45 minutes. ! as I request to dr. A please you know my Madical condition if is okay to go home be coz I can't be a staying on this wheelchair any more ! So he told me you can go home but you need to shine to your are discussing by your self ! So I said okay and nurse tokens other 10 to 20 minutes ! So I was on the wheelchair about 5 hours or more ! So I can only say to all my friends know one knows what kind of difficulty in you body and what you suffering for what's you passing through on your Madical condition ! I'm just surprised if nurse don't know your illness but DR. ? They don't know what is scleroderma sclerosis ? Basically I'm ignored by qualified doctors and nurses ! I'm still getting bled from my oesophagus ! I already past one more week after hospital ! Still not respond any thing from my GP ! Or hospital When I compline any thing to my GP they not bother me and they probably think I'm depressed ! So This is my filling. When I get this kind of difficulty then I'm thinking to not to see any doctor or go to any hospital ! Be coz is no point? If is no treatment for patients way patients need to suffers with all this? So there is no hope with other accept good ! Just I'm looking after my shelf ! I hope you all my friends don't mind if I wrote anything wrong . And thank you for reading my concern kind regard.
I'm disappointed with my illness with... - Scleroderma & Ray...
I'm disappointed with my illness with NHS doctors and nurses !
I am so sorry that you are having such a difficult time and had to wait so long at the hospital. Maybe it would be worth asking your doctor to refer you to the Royal Free in London where they specialise in Raynauds and Scleroderma. My local Rheumotogist admitted he knew very little about the disease so once I was rcommended to Professor Denton and his team I got all the help I needed. I meet people there from all over the country. I do hope you get help very quickly and sending lots of healing thoughts to you.
Hi monika thank you for your answer. I did not reply back to any off my friends before I'm sorry but I Ben look after with professor Denton shine last 10 years . After I'm with different doctors. So just attending all Apointmant to Royal free London. So thank you kind regard.
HI CAN i ASK PLEASE HOW LONG WAS IT FROM BEING REFERRED TO GETTING AN APPOINTMENT WITH PROF DENTON ? DO YOU HAVE TO WAIT LONG ON THE NHS ?
Hi it's not long wait with dr. Denton ! Nhs waiting is normal waiting list. Thanks.
I understand your anger but you must not give up. Ask to be referred to a rheumatologist and get properly diagnosed. These things happen to us all, the NHS is far from perfect and doctors and nurses have to do their best and most of them do. Best wishes to you. We are thinking about you.
Hi zenabb thank you for your answer. I did not reply back to any off my friends before I'm sorry but I Ben look after with professor Denton shine last 10 years . After I'm with different doctors. So just attending all Apointmant to Royal free London. So thank you kind regard.
Hello Nurmohammed,
Which hospital is this???
As Monika and Zenabb say, you must get a proper referral. Here is the address for Prof Chris Denton at the Royal Free - royalfree.nhs.uk/services/s... and if you 'phone the secretary she can tell you how to get a referral there. If you don't live in London you can also get a referral to the rheumatologist at your local hospital. It may be better to for you to receive care from both hospitals !!
Also it is a good idea to find which GP in your practice has an interest in rheumatology problems, then make sure you always see them from now onwards. If none of them have an interest in rheumatology then perhaps you can find another local practice with a GP who does.
With best wishes,
Tim
Hi tim thank you for your answer. I did not reply back to any off my friends before I'm sorry but I Ben look after with professor Denton shine last 10 years . After I'm with different doctors. So just attending all Apointmant to Royal free London. And I attend Leicester Glenfield hospital CDU until. And As I said GP are pointless ! Local Royal hospital are no any scleroderma sclerosis specialist ! Other Ganeral hospital which is I'm attending for my kidney disease ! So thank you Tim kind regard.
I can only despair over how our above friend has been treated under the NHS. Clinic waiting times can be very long and I imagine feel even longer in a wheelchair. Suggesting Prof Denton at the Royal Free in London is perfectly fine but it's not the solution for most who live far outside of the capital. From experience I know a trip to London is difficult if suffering from mobility issues/fatigue and there is also the cost as not all travel costs can be claimed under the present rules. There is also the cost of overnight accommodation if one has an early clinic at the Royal Free.
It is wrong that one has to travel to London for treatment too. My Sclero Consultant in Liverpool works very closely with Chris Denton and I would hope I am not medically disadvantaged because I don't live close to London. Perhaps Chris Denton or one of his team might consider a 'pop up clinic' in North if he thinks we are being denied the best care!
Hi thank you for your answer. I did not reply back to any off my friends before I'm sorry but I Ben look after with professor Denton shine last 10 years . After I'm with different doctors. So just attending all Apointmant to Royal free London. And I did ask nearest hospital . I'm going to ask again now on my next Apointmant and see what's comes out . So thank you kind regard.
Hi I'm new, have Reynauds and am. Exhausted 
new to all this...bit scary!!!
New to all this and looking for some guidance from those with more experience
