Feeling ignored by NHS

[caron6056]

This is my first post here and have found reading all your posts reassuring, I don't feel quite so alone, so thank you.

I was eventually diagnosed 2 years ago after a long battle to be referred by my GP who was convinced that at 49 years all my symptoms were simply age related. According to my rhumatologist I was apparently responding well to treatment (methotrexate and hydroxychloroquinne) as my inflamation levels had dropped at last visit in October last year, although in a lot of pain in my elbows and feet, and niggles in my knees. Had surgery in November to correct toe deformity and a tear in my planter plate, and my surgeon is doing cartwheels because my foot no longer looks like it has been in a fight with a steam roller on the XRays.

However, my operated foot although more attractive, is more painful than ever, and I still need the other foot corrected, if I can bear it, so unable to walk at all without a lot of pain. I had XRays on both knees last week that have now become too painful to kneel on, and won't get the results till next week.

My GP although sympathetic, pretty much says there is nothing she can do as I am under rhumatology and receiving drugs and pain relief already.

I can't sleep due to back, knee and foot pain, and am exhausted and a little depressed after being pretty much housebound since November as I can't drive my manual car and can't afford to replace it.

Sorry to sound so negative, I keep telling myself there are a lot of people a lot worse off than me, but I am feeling rather abandoned. Has anyone else had this experience, or any advice? Thanks

[caron6056]

Thank you! I am reluctant to make a fuss when it comes to me, my hubby always says I would be screaming from the roof tops if it was my kids. I probably do need to contact my Rheumy, thans for the support

[flow4]

I'm so sorry, caron. It sounds like you've had a really rough ride. My story is similar (in that I'm a similar age and it took a similar amount of time for me to be diagnosed for similar reasons) but I can still drive. I would be absolutely frantic if I couldn't. I turned down foot surgery last year, partly because I'd had a hip replacement the year before, and partly because the surgeon said the chances of success were only 50:50, with a risk of more pain afterwards, or serious complications that might need amputation. I didn't think that was a good bet...

I generally avoid walking now. I drive everywhere and have a Blue Badge so I can park close to where I need to be. (If I can't park close, I just don't go, as a general rule). Very unusually, I did walk about 300m today - the furthest I've walked so far this year has been only about 50m - and now my feet and ankles are burning, and my knees are sore. I remember feeling like that constantly before I got my BB and my diagnosis, so you really have my sympathy.

For me, there have been a few things that have brought my pain down really significantly in the last 3 months. Being assertive and asking my GP and consultant to help work out what was wrong and tackle my pain was the starting point... I only started DMARD at the beginning of Nov, and they do seem to have made a difference. My GP raised the dose of my NSAID when I told him I hadn't had a pain-free waking hour in 4 years... I swim or do aquafit very regularly - 3 to 5 times a week - and that has reduced my knee pain significantly and completely got rid of my back pain over 9-12 months. I have lost some weight, and can feel that losing more will reduce my pain further. Not walking also helps control my pain, although of course it has other drawbacks... I wonder whether any of these things might help you, too?

One thing to think about is the fact that there are currently a LOT of Motability cars going to auction houses. 10,000-14,000 disabled people have lost their Motability cars as they have been transferred from DLA to PIP, and the eligibility criteria have risen. Personally, I think this is scandalous... But it has made me think that I might be able to afford an automatic car for the first time...

I hope you find something that helps. It's miserable to be housebound. Best wishes.

[caron6056 in reply to flow4]

Thanks so much for your reply, I was driving, although painful and I had to avoid journeys where I might have to use the clutch a lot , but not since the op. I had thought about swimming, as I can't go for a walk any more, I will definitely try this as it has helped you, I really need exercise. I lost weight after my last steroid injection last July as I had 6 weeks with almost no foot pain, but am putting it back on since the op. My surgeon says I can't have further injections as they are weakening the tendons :(. I have applied for Pip but I hear it takes a while, hopefully I will qualify and can get mobile again, thanks for the support, hope you stay well

[flow4 in reply to caron6056]

Swimming definitely does help. I'm lucky enough to go to a pool where there is a jacuzzi and sauna too, and the combination of heat, water, relaxation and exercise has been fantastically good for my pain management, physical fitness and mental health. I'd really recommend it, if you can.

I applied for PIP in early Sept, had my assessment in mid-Dec, and got my first payment in early Jan - so 3 months in total. I was awarded the standard level of the daily living and mobility components, which is not enough to qualify for Motability. I didn't have DLA before so I'm not losing anything, but lots of people are losing their eligibility. However, you don't need to qualify at all to be able to buy a second-hand automatic ex-Motability car... So although it feels unfair to gain from someone else's loss, I am considering this...

[Jora]

Poor you. My vision is so bad that I can't read all yr post, but just wanted to send my support. I am sure you should qualify for help from your local council.

Best, Jora

[Lankylasso]

Hello Caren

I have had a fight too ,first with too doctors from my surgery.who said they wouldn't refer me as they would not operate anyway.

I have already had my knees done which also was a long battle.and my hip had got so bad I could barely walk.and then I had pain back in my knee so the doctor sent me finely to the surgeon who was wonderful,he said it was my hip and agreed to replace it and another battle began with the man who gives you the spinal block.They said I needed a high dependency bed so I even had to change the hospital go through all the process again.to cut a long story short I have had my hip done without the need for a high dependency bed but in the process of all this I lost my husband who gave me so much support.

[caron6056 in reply to Lankylasso]

Really sorry to hear that, such a shame so many of us seem to have to fight so hard for help.

[Hidden]

I have deformed hands and the will not operate as I am not in enough pain

[caron6056 in reply to Hidden]

That makes me so cross, surely you are the best person to judge how much pain is too much. Thanks for your reply, it does help to know your not alone!

[Hidden in reply to caron6056]

They are very good at nras I feel lods better knowing I have understanding friends here

[flow4 in reply to Hidden]

The trouble is, hand and foot surgery is complex, basically because there are so many bones. It doesn't always work well (as caron has discovered). When I had my hip replacement, the surgeon said "The only thing I can guarantee is a reduction in pain" - not an improvement in function, notice. With hands and feet, because the joints are smaller and harder to operate on, it seems they can't even guarantee that. So they don't recommend it until you are so desperate you'll try anything...

[Hidden in reply to flow4]

Well if you put it like that I can see there reluctant to operate it would be good if they could have explained things better then I would not have felt so let down thanks for replying

[caron6056 in reply to Hidden]

Good point, I must admit I'm thinking twice about having the right foot operated on after my experience with the left, best wishes

[flow4 in reply to caron6056]

It's such a difficult decision... I'm hoping I can put off making it for a while yet...

[flow4 in reply to Hidden]

Consultants' communication skills are SO bad sometimes! And it matters so much, because with bad communication, people can't make informed choices, and/or feel confused or let down, like you. I wish more medical schools would do something about it!

[bella-bailey in reply to Hidden]

Hi June, I have had my knuckles replaced with plastic ones, I don't have as much pain as I did have and hand was nice and straight for about a year but now going deformed again. I am still glad that I had it done though x

[Hidden in reply to bella-bailey]

Hi I have got hands that have got very bad in quite a short time I was diagnosed in 2013 and now told I have an aggressive form of rheumatoid arthritis you don't realise how much you need your hands and feet until something like this happens I hope you are not in too much pain now

[bella-bailey in reply to Hidden]

Still in pain but not quite as much. Still find it difficult to pick things up but we have to soldier on lol. Hope you manage to get yours sorted out soon, let me know how you get on x

[allanah]

Can't add much to above but thinking of you X

[Hidden]

I often think that Rheumatologists / doctors incl. GPs who left the patients "dead" without an early treatment (hence the progression of the disease) ought to be fined, named and shamed. That is utterly against what NICE guideline recommends. This is utterly horrendous. Is there any way to pursue a lawsuit against NHS? Simply so absurd to leave patients without any treatments until they become so damaged and disabled. But sadly, this happens fairly commonly as they can get away with it. They think, "oh just send her or him to orthopaedic to deal with the Sh** - not my problem". So unethical...

[flow4 in reply to Hidden]

All GPs or group practices are self-employed small businesses now, so if you wanted to sue, it would be the practice not the NHS you'd take action against. The NHS has little or no control over what GPs now do. That's a large part of the problem, IMO.

[Mandalou]

I would ring your Rheumatologists secretary and ask for an urgent appointment. You should not be suffering like this Caron.

Mx