Has anyone had experience of being refused treatment on the grounds of cost?

[cathie]

Its also interesting to know whether we're being steered towards cheaper treatments in this era of cost cutting.

[Hidden]

Hi Cathie, I have to say that in my 17yrs of RA have never been refused treatment or had any discussions regarding treatment cost.

I know it is sometimes referred to as a post code lottery concerning treatments,I am however fortunate enough to attend a good hospital and have a good consultant.

mand xx

[cathie in reply to Hidden]

Thanks for this. I found when I moved to Scotland that people having infliximab infusions around me had found it hard to get the anti-TNF although I think its more readily available now.

[Hidden in reply to cathie]

Hi Cathie, not fair though is it getting the treatment we need shouldn't depend on where we live.

About twenty years ago now (long time I now) me and my husband wanted to give ivf treatment a go as we were told we couldn't have children, anyway were told we would have to pay thousands for treatments money we didn't have but if we lived about twenty miles away we could have got it for free! Where's the justice in that?

mand xx

[Hidden]

the system is post code lottery.. to get anti-tnf I HAVE to transfer my care to a different healthcare authority!! eg worcs or wiltshire.. and after two years.. cos of diagnosis.. my rheum dept is holding an open day.. prob because of bad press coverage re bad patient care./cleaniness/ health and safety etc.. same day as nras 10th birthday lunch!!.. they sent me a letter saying they had provisionally booked me a place!!!!!... advice please any one think I SHOULD go??!!!!!

[Hidden in reply to Hidden]

Hi Alison, I'd think well what have I got to to lose by attending, nothing I suppose. On the other hand what will I gain form going, you will be able to see what you need to and to ask any questions I presume, so if it was me and I'd had the invitation then I think I would attend.

Hope your feeling better, have you gone back to work yet? or is it this Friday?

Good luck with whatever you decide

Mandy xx

[Hidden]

yeh might do that! I was eying nras event but it is £20 and a far way to drive.. its the same day.. thats the quandry its a whole day.. compared to my working day.. will have to take a days leave but good excuse for day off.. the letter that came.. said meet your team and ancillary staff.. we view this as an important part of your healthcare??!!.. diagnosed 2 year ago virtually nov 09 think.. but what have i got to ask to loose.. but wont be able to ask embarrasing questions about funding for drugs cos I work there.. awkward

[cathie]

The question Alison poses raises an issue touched on by Andrea which is what is the scope of our responsibility to draw attention to the way people let us down. I suppose that we're well placed to do this, to explain how things disadvantage us, but we arent very well, and it is burden. And I've got huge respect for people who take it on, on top of everything else. I suppose that by interacting here, we're doing a bit to clarify what's going on and to work through issues and strategies.

Apropos my original question, I dont get the impression that many people have had experience of being refused treatment on financial grounds. perhaps we should collectively keep an eye open on this one over the next few months?

[LavendarLady]

I have not been refused treatment on cost grounds and would kick up a hell of a stink if I was! I have been on anti tnf for 3 years as well as MTX (hate it), neurofen when the pain gets bad and a multi vit tablet. Did have a problem when my specialist changed my anti tnf as the original wasn't working as well as he thought it should. Had quite an argument with the practice nurse "you do realise how expensive this is!" as if it was my choice to change! Told her if she wanted money I would take out a mortgage - no further comments after that! If you are refused because of cost, fight it every step of the way and enlist your MP's help as well as your GP and Consultant. lavendar Lady

[cathie]

Thanks for this. I've never been refused treatment outright, but years ago there was some shilly-shallying about starting on anti-tnf which cost me a lot of suffering and probably my job in the long term. The thing that worries me is not an outright refusal, but something more subtle than that. Sleight of hand I suppose. This was triggered obviously by the cuts, but also by a conversation I had with the consultant last time we met. She said at the end of our meeting, well I will be recommending that you continue with infliximab. I was astonished because it has been working well, I've built my life around this and were she not to recommend it to continue I'd be devastated. I checked with the nurse the next time I had the infusion and she confirmed that nothiing is for ever and treatment can be reviewed. And this is in Scotland where we are avoiding a lot of the worst of the cuts.

[Hidden in reply to cathie]

Hi cathie, I'm due for my Rituximab soon, well I'm holding out for a bit but the Rheumy says to get it now. Anyway, when I do have it I know that it as to be presented for funding of the drug and they can't go ahead until it's been cleared.

Nothing is forever and I often think well what if they come back with a no then what would I do.

mand xx

[Hidden]

This is so wrong Alison, I really thought that the NICE guidelines for RA were for everywere and not a postcode lottery!

Here is the link to Nice guidelines for RA if there is something you are not happy with bring it up with your consultant nice.org.uk/nicemedia/live/...

Take care

Julie x

[Hidden]

Julie is right. The guidelines are intended for all but at the end of the day they are just that ... guidelines! If an authority hasn't allocated necessary budget to Rheumatology (after all it isn't sexy like Cancer care or paediatrics) the patient suffers by possibly not receiving the best treatment.

Always best to shop around and see what's on offer!

Lyn x