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I have been working hard to raise awareness of Lupus via a petition I set up on No 10 downing Street website.
I do feel that the petition it not going to achieve that much as there are a number of petitions on the Government Website but it has been a very good starting point for me to talk to people and contact people.
So I thought I would let you know what I have been doing:
I have set up a facebook group called ePetition No 10 Dowining Street - Lupus SLE - Systemic Lupus Erythematosus and have got a lot of support from this group.
I managed to get in contact with N'Deaye Ba's mother Christina. N'Deaye was a well known actress in London who died of complications of Lupus aged 32 and before she died she made a video diary of her struggle with Lupus. Recently a film was made which had a special showing at the Baftas 2008 and got a standing ovation but British television did not buy the film to show on UK TV. Well Christina has given me a copy to help raise awareness of Lupus but I am not allowed to sell it or make copies.
I then Lobbied my MP Mr James Paice at the House of Commons to discuss the treatment of Lupus patients and the delay in getting diagnosed.
Mr Paice agreed to meet me at my home to discuss my Lobby and I prepared for this visit by contacting people with Lupus on my facebook group and asked them to write me a letter about how they were treated by their GP's and any medical staff whether good or bad and any experiences they wished to share. I found out Mr Paice was on the All Party Parliamentary Group for Lupus and we had a good meeting. I gave him a letter with my concerns with regards the treatment of people Lupus and included letters people had sent me including Christina N'Deaye's mother. Mr Paice said he would try get the Government to start an enquiry into the care of Lupus patients and would write back to let me know how it went.
I have also contacted Lupus UK Cambridge and they are interested in showing the film to their members, partners and carers.
I have contacted a School of Nursing and they are going to arrange for me to show the film to student nurses.
Finally but not least I am pleased to say that I have managed to contact a consultant in Addenbrookes a hospital in Cambridge who would like me to show the film to Dr's specialising in Rheumatology and Blood disorders.
I am very pleased that in some small way I am raising awareness of Lupus and if anybody would like to write me a letter about how they were treated I would be happy to add it to the letters I have as I do feel the more letters I get and the more support I get the more I will get listened to - hopefully.
If you do write to me I would like your name, address and age on the letter but if you would rather not put your full address then area will do.
Thank you
Have a Merry Christmas and Happy New Year
I do feel that the petition it not going to achieve that much as there are a number of petitions on the Government Website but it has been a very good starting point for me to talk to people and contact people.
So I thought I would let you know what I have been doing:
I have set up a facebook group called ePetition No 10 Dowining Street - Lupus SLE - Systemic Lupus Erythematosus and have got a lot of support from this group.
I managed to get in contact with N'Deaye Ba's mother Christina. N'Deaye was a well known actress in London who died of complications of Lupus aged 32 and before she died she made a video diary of her struggle with Lupus. Recently a film was made which had a special showing at the Baftas 2008 and got a standing ovation but British television did not buy the film to show on UK TV. Well Christina has given me a copy to help raise awareness of Lupus but I am not allowed to sell it or make copies.
I then Lobbied my MP Mr James Paice at the House of Commons to discuss the treatment of Lupus patients and the delay in getting diagnosed.
Mr Paice agreed to meet me at my home to discuss my Lobby and I prepared for this visit by contacting people with Lupus on my facebook group and asked them to write me a letter about how they were treated by their GP's and any medical staff whether good or bad and any experiences they wished to share. I found out Mr Paice was on the All Party Parliamentary Group for Lupus and we had a good meeting. I gave him a letter with my concerns with regards the treatment of people Lupus and included letters people had sent me including Christina N'Deaye's mother. Mr Paice said he would try get the Government to start an enquiry into the care of Lupus patients and would write back to let me know how it went.
I have also contacted Lupus UK Cambridge and they are interested in showing the film to their members, partners and carers.
I have contacted a School of Nursing and they are going to arrange for me to show the film to student nurses.
Finally but not least I am pleased to say that I have managed to contact a consultant in Addenbrookes a hospital in Cambridge who would like me to show the film to Dr's specialising in Rheumatology and Blood disorders.
I am very pleased that in some small way I am raising awareness of Lupus and if anybody would like to write me a letter about how they were treated I would be happy to add it to the letters I have as I do feel the more letters I get and the more support I get the more I will get listened to - hopefully.
If you do write to me I would like your name, address and age on the letter but if you would rather not put your full address then area will do.
Thank you
Have a Merry Christmas and Happy New Year
You sure have been very busy 
