I have watched my beloved sister slowly and then quickly disintegrate with a fearful combo of lupus? Scleroderma? Raynauds etcs:She is freq hospitalised now with serious chest involvement, needs wheelchair to move, O2 to breathe, and days of a girlie night out are far in another life. Shes married, 42, 2 kids, lives outside Belfast and is bright and brave. I'm in Australia trying to do whatI can long distance. There is no real help in N.I. There seem no rheums with spesh knowledge of immensity of Lupus field, and for the bits of her body which keep breaking down, the specialists divvy up and play around with her precious life. She is due to see d'Cruz in London on 25 Nov if fit, but travel is virtually imposs. Anyone know if there is someone closer,or if tis poss to get him to come over to her? Feel so useless.
Hello from sister 0f a sufferer. Home visits?
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Welcome to the forum Annie but I am very sorry about what brings you here.
It is so tough when loved ones are in need and so far away.
There does seem to be a particular problem getting specialist care in Northern Ireland. One of our members had to go down to London recently. Yet there used to be an active Belfast LupusUK branch. Maybe you could check them out through LupusUK to see if one of the Belfast members might know of a specialist.
I am sorry but I have never heard of any of these specialists travelling to see patients. I have heard of consultants consulting with them about a patient though, when travel has been impossible.
I will be keeping your sister in my prayerful thoughts
All the best
Clare
It is so tough when loved ones are in need and so far away.
There does seem to be a particular problem getting specialist care in Northern Ireland. One of our members had to go down to London recently. Yet there used to be an active Belfast LupusUK branch. Maybe you could check them out through LupusUK to see if one of the Belfast members might know of a specialist.
I am sorry but I have never heard of any of these specialists travelling to see patients. I have heard of consultants consulting with them about a patient though, when travel has been impossible.
I will be keeping your sister in my prayerful thoughts
All the best
Clare
Joined
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6,152 Posts
Dear Annie
Im very sorry to hear about the plight of your poor sister. She does indeed sound very ill :worried:
I live in Dublin so I cant be of much help with the Northern Ireland situation but I attend Beaumont Hospital in Dublin under Grainne Kearns. There is also another rheumatologist there called Paul O'Connell. Both seem very versed in Lupus and have written papers, etc so I am wondering if a contact with them might help? Im really stabbing in the dark here as I have no idea of their formal area of expertise or if they could indeed review your sister. The travel from Belfast to Dublin by road would be easier on your sister though.
The other thing I would do is make direct contact with Dr. d'Cruz and see whether he would travel over. Desperate situations call for desperate measures and all he can do is say no and you are no worse off than before. Why not send him an email and explain your worry about your sister not being fit for travel, etc and see what happens? No harm in trying.
If you want any contact numbers for Beaumont just let me know. Like I say, its a long shot and I dont know about referrals between hospitals north and south but Im pretty sure they have a private facility where they might be willing to review your sister. Does she have the means to go private?
Joan:rose:
Im very sorry to hear about the plight of your poor sister. She does indeed sound very ill :worried:
I live in Dublin so I cant be of much help with the Northern Ireland situation but I attend Beaumont Hospital in Dublin under Grainne Kearns. There is also another rheumatologist there called Paul O'Connell. Both seem very versed in Lupus and have written papers, etc so I am wondering if a contact with them might help? Im really stabbing in the dark here as I have no idea of their formal area of expertise or if they could indeed review your sister. The travel from Belfast to Dublin by road would be easier on your sister though.
The other thing I would do is make direct contact with Dr. d'Cruz and see whether he would travel over. Desperate situations call for desperate measures and all he can do is say no and you are no worse off than before. Why not send him an email and explain your worry about your sister not being fit for travel, etc and see what happens? No harm in trying.
If you want any contact numbers for Beaumont just let me know. Like I say, its a long shot and I dont know about referrals between hospitals north and south but Im pretty sure they have a private facility where they might be willing to review your sister. Does she have the means to go private?
Joan:rose:
anniemac,
I am sorry for you and your sister. I will pray for help for both of you. I know it is hard to understand but sometimes doctors can do only what they know to do. I know this will not make you feel better.
This is only advice so take it for what it is worth. Have someone close to where the doctor is call and take with one of his nurses. Let them know what is going on with her. The nurse will talk to the doctor and maybe he will or is planning a trip near there sooner. Don't forget to let him know that they are doing what they can but she still seems to be going down hill and that if at all possible could he see her here at the hospital. Not sure if you have the same problems usa does but doctors are limited which hospitals they can practice at. If this is not possible their office maybe able to advice of a closer doctor that could help you now. Has anyone talked with the doctors caring for her to see if they know anyone closer that might be able to be called?
You will be in my thoughts all day please let me know things are going for you.
Tammy
I am sorry for you and your sister. I will pray for help for both of you. I know it is hard to understand but sometimes doctors can do only what they know to do. I know this will not make you feel better.
This is only advice so take it for what it is worth. Have someone close to where the doctor is call and take with one of his nurses. Let them know what is going on with her. The nurse will talk to the doctor and maybe he will or is planning a trip near there sooner. Don't forget to let him know that they are doing what they can but she still seems to be going down hill and that if at all possible could he see her here at the hospital. Not sure if you have the same problems usa does but doctors are limited which hospitals they can practice at. If this is not possible their office maybe able to advice of a closer doctor that could help you now. Has anyone talked with the doctors caring for her to see if they know anyone closer that might be able to be called?
You will be in my thoughts all day please let me know things are going for you.
Tammy
Hello again anniemac
Googling ( lupus Belfast) brings up some possibly useful references, names of specialists there.
I guess your sister is seeing Dr D Cruz at St Thomas' Lupus Unit. Perhaps he could suggest a lupus specialist in Belfast and it could be worth asking her present doctors to consult with another. However I wouldn't hold out any great hope of this finding her better treatment. Belfast is a very small place and I am sure they all know each other very well.
Since your sister is already in touch with Dr D Cruz at some level, if she can't make the trip it is even more reasonable to ask if he discuss the case with her present doctors who will have written to him anyway.
Consultants can't take over cases in other areas or hospitals that they do not work at, as you probably realise even if the hospital is just down the road
Is your sister on her own?
All the best
Clare
Googling ( lupus Belfast) brings up some possibly useful references, names of specialists there.
I guess your sister is seeing Dr D Cruz at St Thomas' Lupus Unit. Perhaps he could suggest a lupus specialist in Belfast and it could be worth asking her present doctors to consult with another. However I wouldn't hold out any great hope of this finding her better treatment. Belfast is a very small place and I am sure they all know each other very well.
Since your sister is already in touch with Dr D Cruz at some level, if she can't make the trip it is even more reasonable to ask if he discuss the case with her present doctors who will have written to him anyway.
Consultants can't take over cases in other areas or hospitals that they do not work at, as you probably realise even if the hospital is just down the road
Is your sister on her own?
All the best
Clare
d'Cruz e mail?
Thank-you all for your rapid replies. You dont know how much it means to know there is a network out there to access info. My beloved wee sister seems to have accepted her state. Stocical where I rage against the uselessness of system. She does not think it is possible she will make her appt in London with d'Cruz, but has given me permission to e-mail him directly. Does anyone have his personal e-mail? Thanks for all the help so far. Anne
Thank-you all for your rapid replies. You dont know how much it means to know there is a network out there to access info. My beloved wee sister seems to have accepted her state. Stocical where I rage against the uselessness of system. She does not think it is possible she will make her appt in London with d'Cruz, but has given me permission to e-mail him directly. Does anyone have his personal e-mail? Thanks for all the help so far. Anne
Joined
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6,152 Posts
Hi Annie
I found an email for him on this site.
http://www.bmj.com/cgi/content/full/332/7546/890
I sincerely hope it helps. Your sister is lucky to have you as an advocate. Please let us know how you get on
Take good care
Joan:rose:
I found an email for him on this site.
http://www.bmj.com/cgi/content/full/332/7546/890
I sincerely hope it helps. Your sister is lucky to have you as an advocate. Please let us know how you get on
Take good care
Joan:rose:
Is it possible for her to go into hospital, then do a hospital to hospital transfer so she can travel to london that way ? I have no idea if this was possible, but it would be worth checking out.
Your sister is lucky to have such a wonderful sister to advocate on her behalf.
regards
raglet
Your sister is lucky to have such a wonderful sister to advocate on her behalf.
regards
raglet
Joined
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150 Posts
Some great suggestions already
Hi Anniemac
pleased to meet
you on our site, and I am so sorry that you have found it so hard to help your sister from such a distance.
Hopefully some of those suggestions from our group, both moderators and posters, may be able to help you.
I have been in the group for well over a year yet, and have had great support too.
So all the best to you and your sisterin the future. you are welcome to email/pm me at any time.
marymackay
Hi Anniemac
pleased to meet
you on our site, and I am so sorry that you have found it so hard to help your sister from such a distance. Hopefully some of those suggestions from our group, both moderators and posters, may be able to help you.
I have been in the group for well over a year yet, and have had great support too.
So all the best to you and your sister
in the future. you are welcome to email/pm me at any time.marymackay
Joined
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115 Posts
hi annie my name is alex
i hve lupus and live in belfast
please contact me i can chat to your sister and see if i can offer her any advice
i also had to travel to london to be diagnosed
send me a message i am usually here every day
alex
i hve lupus and live in belfast
please contact me i can chat to your sister and see if i can offer her any advice
i also had to travel to london to be diagnosed
send me a message i am usually here every day
alex
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