Referrals!

[jjandsj]

Why dont our GP want to refer patients, my Granddaughter is 27 tomorrow and has APS, ITP and Lupus. She has had to Strokes and numerous TIA's and for the past ten year under our local hospital has had little help with all of this. Her immune system is rubbish and she has just come out of hospital after having sceptecemia. I am trying to get her referred to Prof. Beverley Hunt at St. Thomas'. Her local GP has done to referrals but sent them to the wrong hospitals, Kings and Guys who both rejected them because Prof. Hunt doesnt work there, I have even been in to the GP with the full address and fax number for Prof. Hunt which her secretary gave me a couple of days ago, but the GP says he has to get permission to refer to St Thomas' so here we are waiting again, its been 10 years now. We dont have a specialist in Northants to deal with APS, ITP or Lupus, so what is the problem with referring her?

jjandsj

[MaryF Administrator]

Yes to the advice given above by APsnotFab, a polite and clear letter, explaining what has happened and could they please re write the letter to the correct address, you could even put cc St Thomas' Hospital on it, and yes that you will be taking it up as a last resortwith your PCT aided by your local MP. Although it would appear that there had been a slight clerical error resulting in real difficutly and stress for the entire family. Be firm and informative in the letter and explain how very very upset everybody is, and her recent experience of infection and that you are aware from the very supportive forum you a member of, how much better patients do once they get the expertise from St Thomas' in the equation, to fine tune things and keep people on an even keel. Best of luck, you are nearly there with this by the way! Let us know how you get on! MaryF x

[jjandsj in reply to MaryF]

I will definately do this and keep fingers crossed that it gets us somewhere. Prof. Hunt has already responded to an e-mail that I sent her saying she would be delighted to see my Granddaughter but must get the GP referral. Thank you again will keep you informed how I get on. x

[MaryF Administrator in reply to jjandsj]

Good, and attach her response to the letter you have sent.. and really accentuate the misunderstanding and clerical error to leave room for their dignity to stay intact! Mary F x

[jjandsj in reply to MaryF]

Thank you Mary, yes I will stress the point that it was their error that has caused all the problems. I have only just joined the forum and all this good advice is amazing! Thanks again x

[jjandsj]

Thank you so much for your help and info it has been a worrying 10 years for all the family as I am sure it is for others with the same illness, I will keep you advised how I get on but will definately do as you suggest, thank you.

[Jade]

I do hope you soon have some success getting a referral. Perhaps you could ask if it could also be treated as an urgent referral given her recent extra illness. X

[jjandsj in reply to Jade]

Thank you Jade, this one really scared us we all thought it was the end for her, she looked so poorly in the hospital bed, but thank God she is a fighter!

[pluto5]

I can't get a referral from my GP. I need a carotid doppler test as my levels are way above the norm.They wouldn't operate because it is too risky. The carotids are the main arteries to the brain which carry the oxygen. MY levels are now so high that I am concerned. If my carotids get completely blocked then I am dead. Between 2002 and 2009 the levels had increased times 3, and it is now 3 years on....

[MaryF Administrator in reply to pluto5]

Firstly, sorry to hear about GP attitude, quite a common story we hear on here. I had to push very hard. Firstly films with Professor Hughes talking, then evidence that I had indeed had this in the past and been a patient at St Thomas', also various papers downloaded and printed out, newspaper articles and several books, a delivery of all of these, some even as Christmas presents etc.. and firm letters from myself and visits from my husband. It is in their interest to refer you, as it will fine tune your care making it easier for them as well as you. Where are you located? This would be helpful to know. The other route is to save up and go privately to London Bridge, I did the tests there once, and now just have two appointments a year, that jolted the NHS to do their job properly with my family!

I also copied everything to every relevant person, I saw medically including the children's paediatricians and also nurses at clinics. I just never gave up... they were sick of the sight of me! Mary F x

[jjandsj in reply to MaryF]

Hi Mary, well we seem to be moving along slowly, my Granddaughter had to have her bloods done yesterday so asked the Dr how things were going with her referral and he actually said he had written to his higher ups to ask for the referral to be allowed, what that means we dont know but are hoping it means that it will happen, thanks again for all your good advice x

[MaryF Administrator in reply to jjandsj]

Good on you. Mary F x

[jjandsj in reply to MaryF]

Thanks Mary x

[sgtraf]

Had the sane symptoms for at least past sixty years more or less started to get it sorted out about 12 years ago in Musgrove Park, Hospita, Taunton, Somerset.