WW might it be worth £200 for a private assessment? Make sure they know you are there because NHS let you down. I have known consultants switch patients to NHS list as they know they have had a bad experience I think Punk has an excellent suggestion of a haematologist. Yiu can get all previous results to take with you. New rules say they belong to you not the nhs
I found this on an NHS site ...
Sickle cell disease usually requires lifelong treatment. Children and adults with sickle cell disease will be supported by a team of different healthcare professionals working together in a specialist .. it’s the NHS website and I just typed in sca good luck, I know how it feels when you are not taken seriously
Weeds are flowers, too, once you get to know them.” A A Milne
I am concerned that he is being treated as though he has SC trait, where it seems obvious to me, that he has SCD. [ not sure I am entitled to have such an opinion, having never met him, but it is what I think ] It might be worth trying to persuade him, that referral to a haematologist would be worthwhile, although being a stubborn man of 60, I think I know how a stubborn man in his 50's feels. I hope I am not prying too much, if so please tell me to back off, it is just that I saw a lot of SC crisis' when I was in Nigeria, and as you know they are horrible.
How can you lie there and think of England When you don't even know who's in the team
I would agree with Lily Pilly, my son has an on going illness, he’d been treated by NHS for everything but what it was. They gave him a drug that they ‘thought’ would work, well it didn’t, and when he was too weak to walk and could hardly move, i insisted on having a private consultation, it cost £220. He and his wife were in there for about 2 hours. He talked to several doctors who were experts in the illness all around the world and found a drug that was working. The doctor then insisted my son was admitted instantly to the nHS hospital and he was to have this particular drug, the NHS said they couldn’t afford it, private doctor said they could, well in the end they did, but David was in hospital quite a while. The conclusion was that as david had responded well they would use the drug but without that private doctor, well, he wouldn’t be here now. i have absolutely no faith in the NHS. I’m not saying that care isn’t good, once a person is diagnosed and admitted, they are lovely, It’s just getting there in the first place.
Gardening on the wild, windy west side of Dartmoor.
Thank you all so very much. It's a lot to take in. Your right Pdoc he is being treated as trait, and we can usually keep it under control by prevention. Avoiding situations that being it on ie. Temperature extreme, this means he has strip washed ever since diagnosis due to the change in temperature from air to water it's too extreme and triggers an episode. Keeping hydrated, keeping warm in general or cool in hot weather. Not getting over tired. I buy him Feragloben, but he hasn't seen a doctor in years as he got fed up with not being taken seriously or being suspected of being an opioid addict trying to get pain meds. The option of private health care isn't open to us unfortunately due to us both being on a very low income. He works full time but earns £17 grand a year and being self employed, I'm on less. I'm not sure if he's misdiagnosed or not, we lost a nephew two years ago that was younger than OH and had been diagnosed as a child, we didn't get anything diagnosed with OH until twenty years ago and treatment wasn't very available or helpful then. You are not intruding at all and I am extremely grateful for all the support and advice we have had from everyone, my husband also says a big thank you to you all 😊
Lynn, it's disgraceful that your son wasn't entitled to the best medication possible not the cheapest placebo available! Unfortunately the world is run by greed and those that have the most feel it's not quite enough, so pharmaceutical companies can make life a lottery by pricing the everyday person out of the market. I'm very pleased you were able to get him the right treatment! 😀 I hope he gets all the support he needs to progress to his full potential x
@WonkyWomble. David didn’t have private health care, just a private consultation. The private doctor referred him to the NHS for the treatment, there’s no way I could have paid for the drug. It seems that the NHS don’t like it if you go over the top of them and go private, after that they couldn’t do enough for him. It was so worth the £220. They will find an expert on the illness you’ve got. They talk to you and reassure you.
Davids had several treatments since, first every six months but it’s worked so well he just goes yearly for it now. In between he has intravenous steroids. . It annoys me so much that the fat cats at the top of the NHS take astronomical salerys and huge bonuses each year, more money into the health service, more rises for them.
Gardening on the wild, windy west side of Dartmoor.
That's the same site I found LP - suggesting there are care teams for SCD sufferers. Post code lottery? Wonky - Definitely worth scraping up the necessary for a one off consultation with a specialist if your GP and local serves don't come up with some sensible advice.
Painting done for today and, while it dried and OH was away, this cat moved loads of furniture around. No moaning and groaning and done in double quick time. I shall be pleased when this phase of painting is done! Nearly over. Bet you'll be glad too FG and very satisfied I hope.
BL - I hope you've taken advantage of a solo trip to the plant shop.
Hope you and your patient are both doing well LP.
Vendée - 20kms from Atlantic coast.
"The price good men (and women) pay for indifference to public affairs is to be ruled by evil men (and women)."
Yes, Obelixx. Had a lovely time. They'd had a delivery of new perennials, 3 for £10, not bad sizes either. I'd meant to buy 9 plants, some BF&B and an obelisk for the clematis I'd already bought. I bought 18 plants, an obelisk and BFB and somehow came home with another clematis as well, a cream and pink group 3 one! The plants are cottage garden type ones, foxgloves, aquilegias, delphiniums, lupins, rudbeckias, asters.
Haven't done any gardening this afternoon, stuck up the rest of the tiles in the kitchen. It's taken time tiling around all the power points, switches, round the window sill etc. OH was a great help with his new tile cutter. Just the grouting then the painting to do.
But tomorrow I've been invited to a ladies' lunch party by a friend. I think some others who I know will be there too.
Dordogne and Norfolk. Clay in Dordogne, sandy in Norfolk.
Evening all, morning Pat, I've passed on everybody's advice to OH and typically as he's beginning to feel better he's reluctant but not completely. The doctor signed him off for the rest of this week and is willing to extend that should he need it. BusyL that sounds like a truck loads worth of plants! 😀good for you, bet you had a whale of a time! Obelixx I did laugh when I read how much you got done with out "help" 😉 Look what I made this afternoon!....without"help"also 😉 New potatoes are now all planted in there 😊 Lynn, I'm so pleased David's treatment has worked for him and that he gets the medication he needs on a regular basis. I do believe that your right that if your not getting help with the nhs then it is worth investing in a private consultation, think your right that the nhs doesn't like to be forced into the position of saying they can't afford something, the drug companies shouldn't be allowed to charge what they do but if people need it, then there's profit to be made! Two bacon and asparagus quiche in the own now and I'm going to sit down, work tomorrow, time for some rest. Thank you everyone for being a sounding board, an ear, a friend and all I need! 😀bless you all! Have a lovely evening! X
Posts
I think Punk has an excellent suggestion of a haematologist. Yiu can get all previous results to take with you. New rules say they belong to you not the nhs
I found this on an NHS site ...
Sickle cell disease usually requires lifelong treatment. Children and adults with sickle cell disease will be supported by a team of different healthcare professionals working together in a specialist ..
it’s the NHS website and I just typed in sca
good luck, I know how it feels when you are not taken seriously
A A Milne
It might be worth trying to persuade him, that referral to a haematologist would be worthwhile, although being a stubborn man of 60, I think I know how a stubborn man in his 50's feels.
I hope I am not prying too much, if so please tell me to back off, it is just that I saw a lot of SC crisis' when I was in Nigeria, and as you know they are horrible.
When you don't even know who's in the team
S.Yorkshire/Derbyshire border
He talked to several doctors who were experts in the illness all around the world and found a drug that was working.
The doctor then insisted my son was admitted instantly to the nHS hospital and he was to have this particular drug, the NHS said they couldn’t afford it, private doctor said they could, well in the end they did, but David was in hospital quite a while.
The conclusion was that as david had responded well they would use the drug but without that private doctor, well, he wouldn’t be here now.
i have absolutely no faith in the NHS. I’m not saying that care isn’t good, once a person is diagnosed and admitted, they are lovely, It’s just getting there in the first place.
The option of private health care isn't open to us unfortunately due to us both being on a very low income. He works full time but earns £17 grand a year and being self employed, I'm on less.
I'm not sure if he's misdiagnosed or not, we lost a nephew two years ago that was younger than OH and had been diagnosed as a child, we didn't get anything diagnosed with OH until twenty years ago and treatment wasn't very available or helpful then.
You are not intruding at all and I am extremely grateful for all the support and advice we have had from everyone, my husband also says a big thank you to you all 😊
This should have been said years ago and I hope that others (is it too much to hope everyone?) will follow her directive.
A A Milne
Davids had several treatments since, first every six months but it’s worked so well he just goes yearly for it now. In between he has intravenous steroids. .
It annoys me so much that the fat cats at the top of the NHS take astronomical salerys and huge bonuses each year, more money into the health service, more rises for them.
Painting done for today and, while it dried and OH was away, this cat moved loads of furniture around. No moaning and groaning and done in double quick time. I shall be pleased when this phase of painting is done! Nearly over. Bet you'll be glad too FG and very satisfied I hope.
BL - I hope you've taken advantage of a solo trip to the plant shop.
Hope you and your patient are both doing well LP.
Yes, Obelixx. Had a lovely time. They'd had a delivery of new perennials, 3 for £10, not bad sizes either. I'd meant to buy 9 plants, some BF&B and an obelisk for the clematis I'd already bought. I bought 18 plants, an obelisk and BFB and somehow came home with another clematis as well, a cream and pink group 3 one! The plants are cottage garden type ones, foxgloves, aquilegias, delphiniums, lupins, rudbeckias, asters.
Haven't done any gardening this afternoon, stuck up the rest of the tiles in the kitchen. It's taken time tiling around all the power points, switches, round the window sill etc. OH was a great help with his new tile cutter. Just the grouting then the painting to do.
But tomorrow I've been invited to a ladies' lunch party by a friend. I think some others who I know will be there too.
BusyL that sounds like a truck loads worth of plants! 😀good for you, bet you had a whale of a time!
Obelixx I did laugh when I read how much you got done with out "help" 😉
Look
New potatoes are now all planted in there 😊
Lynn, I'm so pleased David's treatment has worked for him and that he gets the medication he needs on a regular basis. I do believe that your right that if your not getting help with the nhs then it is worth investing in a private consultation, think your right that the nhs doesn't like to be forced into the position of saying they can't afford something, the drug companies shouldn't be allowed to charge what they do but if people need it, then there's profit to be made!
Two bacon and asparagus quiche in the own now and I'm going to sit down, work tomorrow, time for some rest. Thank you everyone for being a sounding board, an ear, a friend and all I need! 😀bless you all! Have a lovely evening! X