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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi
I went to see the rheumatology consultant this wk.
there is NO WAY that a rheumatology patient can be admitted to a large teaching hospital for RA treatment apart from as an emergency admission. Even with a group of consultants from a lot of disciplines on a complex immune disease case, that are well respected, a planned admission is impossible.
Therefore, my consultant is going to be "Suddenly surprised" by the ill state of me (his patient) and have me admitted that day as an emergency.
Elderly care has access to beds, cancer care does etc all rightly so. Rheumatology and other specialialities are now all out patients based and there is no access. for someone with complex disease (and RA/ lupus/ immune diseases often encompass a range of different specialities this is very difficult or impossible to address through outpatients.)
Rheumatology is not viewed as a priority in any way for the NHS. They cannot accept that RA patients are at times acutely unwell or need an assessment and planned way forward.
My Consultant has this wk spoken to Ailsa Bosworth about the raising of the profile of RA in the government depts that make all these decisions. The reality is these policies are most strongly influenced by "think tank- focus groups" who say what their priorities are for the NHS- cancer care, elderly care, heart disease, childrens wards etc. Because RA effects so few families compared to the 1 in 3 effected by cancer for example, we always occupy the bottom of a very very long list.
By allying ourselves within the umbrella of musculo-skeletal diseases we get clumped with a larger group. It effects more families and therefore puts RA patients in a higher profile group than they would otherwise be.
My argument is that we should be allying ourselves with life threatening conditions/ progressive disabling conditions but this is not a category that really exists.
to try and move things forward- we need to find a way of lobbying to get noticed by the people in focus groups. When all this is over with re my family situation and health limbo- I am going to try and get on the local NHS focus groups.
can we all try and raise the profile of RA in our own drs surgeries/ chemists and outpatients by asking NRAS for leaflets and posters to put up?
can you write and ask to the PCT and offer personal talks to staff about the day to day effects of living with RA?
If you are not well yourself it is so hard to fight this sort of thing and that is why NRAS is so wonderful at sticking up for us as best they can. I think if you can only offer a couple of afternoons once in a blue moon to support the NRAS messages by talking to the local drs surgery, home start group about supporting patients with RA etc it will help .
NRAS, for the size of charity are pretty high profile. They have won awards.
It really is up to us, and the people who love us, to do the drip drip drip of influential grass roots campaigning as we can.
I cannot offer as much as I would like- but what I can do is going to be done.
I wonder what we could do to raise the profile of NRAS and the effects of RA?
Love
Jenni xx how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Well, the NHS never cease to amaze me. As long as you are admitted, Jenni, do ANYTHING you have to.
Your post is clear and well thought out and you are quite right. I have already talked to all the GP's and the nurse in our surgery and they all have the NRAS leaflets and books, which they ALL give out. I am also on the Bolton PCT Rhematology forum. However, you have now given me the incentive to get out to more GP surgeries in the area. As soon as I get my tax disc I'll be off.
Thanks for flagging this up.
Love Jeanxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Like Jean, my GP practice invited me to talk about my day-to-day living with RA, and I was happy to do so, and to talk about NRAS too. At the time, I was the only patient on the books on anti-TNF therapy too. When he has a student doctor, my GP usually sends him/her down to me so they can have a chat about life with RA. Having said all that, I think my GP is actually very enlightened. I had no idea you couldn`t have a "planned admission." Seems very short-sighted, but there you go, nothing really surprises me now. Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 331 Location: South London
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Dear Jenni, this is startling news that we have to be in an emergency state for the NHS to step in. I think it is the way to go to make us bigger by allying with other immune disease groups as they must be in a similar posiition. Last year I went on a days course organised by NRAS to be an ambassador for RA as well as to get the treatment I need. There was 2 meetings one in the norht and one in the south in London. There was a very good turnout and a lot of the people there were no pushovers meaninng they would be good RA champtions Perhaps we need to find out how everyone got on as well as organise ourseves to have at least biannual meetings to help NRAS help us. 
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Hi Jenni,
I so admire your commitment and energy. My GP told me that prior to treating me she's only had one other patient with RA, and was very honest with me in that she did not know much about the disease and treatment. Thank you for giving me the idea and will definitely ask NRAS for posters and leaflets to display in the surgery.
I think I'm really lucky with my local hospital and was admitted earlier this year to my rheumy's ward when I had a kidney infection and E-Coli Sepsas. My rheumy also offered me an admission when I had shingles and lately with my back, as I hate hospitals I stayed at home, but was grateful and was comforted by the fact if I needed a bed on his ward I could access it.
Jenni I'm sorry to hear that you have to go through A&E as an emergency admission to gain access to a bed.
Love,
Barbara
XXXXX
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Jenni, I had no idea that RA wasnt considered bad enough to get you taken into hospital if you are really ill!!! This definitely needs to be changed, we can all join together in this, joining the musculo skeketal group will be a good start. I have no idea how many patients my GP practice has, but probably not many, I would be happy to do a talk there regarding living with RA, if they wanted me to. I can definitely as about putting up posters, and involvement with NRAS too. Just get yourself in there whatever it takes, good luck, Barbs x BARBARA
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 351
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When I asked a nurse at my local hospital why they weren't displaying anything from NRAS, she said that's because we use ARC! Carol
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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Hi Jenni
I'm sorry you and your consultant are having such trouble to get you admitted to hospital. What an awful situation to be in, I hope it gets resolved soon.
I went on an NRAS course to volunteer my services to local health depts, and put my name on their books, but so far there has been nothing connected to long term diseases, and RA in particular, for me to be involved in . Also, Im sory to say that some time ago I approached NRAS about doing a\display at my local health centre. They (NRAS) seemed keen for me to do it, and promised me leaflets., ect, but have not yet come up with the goods. I'll contact them about it again, and also ask at the surgery if could help them in any way.
You have jogged my memory, and I must keep trying to do whatever I can to get this horrid disease into the forefront of the public's mind.
Love Lyn
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 327
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Great post, Jenni, and very inspiring. I'm going to contact NRAS and get some leaflets to distribute at my local surgery.
Anthea x
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