Differing levels of care & treatment

Gracefully

Reading the forums, it seems that some people receive better care, diagnosis, treatment than others and the difference is quite staggering.

I guess that geographical factors may well play a part but is is also a case that some people are better at getting their needs met and supported than others?

I ask because I seem to be slipping beween every crack on the planet and even though I take the advice offered, have made countless phone calls for help from various organisations I seem to be in a permanent state of living in a brick wall cube.

I know I need to change my GP, but may also have to change my surgery. I live in a relatively affluent area, but of course that doesn't mean everyone is affluent - far from it. I feel more like effluent the way things are going for me.

It seems that because of this, the options are actually less - perhaps it's because so many just get private treatment, so the non-private options are lessened. I'm just guessing here to try and understand why we seem to have such a paucity of options.

So does anyone have any tips that work such as, how hard can I lean on a GP to get some kind of positive and helpful care and not be told to take anti-depressants because the pain and struggling with mobility is getting to me?

Are there any better ways to get more help - eg OT or whatever else is out there? How much do you push and push when you get no response or do you feel you are at the point where you're being sidelined for being a 'nuisance'?

Does anyone have a 'tried and trusted' method for pushing for better treatment as a person when they have felt themselves being blocked or denied help?

GraceB

Hello and welcome to the Forum. Not sure if I can help but let's give it a go! I'm not a medically qualified person, but a Forum member.

If I were in your shoes I'd ask to see an orthopaedic consultant and see what s/he suggests concerning your joints and pain. I'd also make a list of how I'm affected by my condition, what I can do and how. Also of course what makes things worse. You say about changing your GP, that may well need to be your first step if your current GP isn't overly supportive ask at your surgery first to see if any of the GP's have an interest in orthopaedics or pain control/management. If you do decide to change surgeries, do you know anyone who uses a neighbouring surgery to see what they think of the support and help they get.

Also consider ringing or emailing the Helplines to see what they can suggest.

If I think of anything else I'll post again tomorrow night when I'm back on the Forum. I tend to be quite obstinate and persistent with getting support for my joints (I have osteo arthritis - OA - both knees, left ankle and lumbar spine).

Keep looking into the Forum, everyone on here is a great support.

Take care,
GraceB

daffy2

It's really difficult trying to battle 'the system' when you are feeling so overwhelmed, and you have my sympathies.
Is your surgery a group practice, and if so have you had any contact with any of the other GPs? As OA is managed by GPs it comes down to finding one you can build a relationship with - if that's one who has an interest in or knowledge of the condition that's a bonus but may not be as important as being a good listener and willing to find the necessary information for you. It does help though to be clear about what it is you want help with, which will usually mean prioritising your concerns and dealing with one thing at a time at each appointment. I know it feels as if your current GP is fobbing you off by suggesting anti-depressants but s/he may feel that if your mood isn't so low you would be better able to deal with your pain etc. Several forum members have found them useful.
If there are any Arthritis Care courses or support groups in your area you would probably find them helpful,not least for the chance to meet other people and find out how they deal with the problems, and what is available locally.
I'm not sure what you regard as expensive telephone numbers but CAB and AgeUK operate regionally so there should be a local number for you to ring. Does your phone have a speakerphone option so you don't have to hold it while you're waiting for a reply? Alternatively can you email?
GraceB has just posted at the same time with some other useful advice so I hope you'll be able to make some progress.

Slosh

Don't dismiss antidepressants. One of the meds I take primarily for neuropathic pain also acts as a mild antidepressant which as my GP puts it is a bonus. I have suffered from depression in the past, linked to specific events and found a course of antidepressants very helpful especially when combined with counselling. I now recognise the signs in myself and did have further counselling this year linked to my becoming disabled, but one of the problems is that it can be difficult to recognise in ourselves especially if it creeps up slowly. It's not just about feelings of suicide or crying but things like loss of appetite and loss of interest in things generally and especially things such as interests or hobbies.

As we all know the NHS is under great pressure as are social services. I was referred to a consultant in August 2013 and finally saw one at the end of November but since then have had regular reviews, mainly as things haven't gone to plan. Physio, yes, been there, and been discharged and keep going with the exercises.

OT, I was referred by my GP in January this year, was seen in August, a long wait but that was to the good as things had progressed and it was helpful.

I agree that a good GP is the key and before changing surgeries would also encourage seeing different GPs at your current practice if you can I think as much as anything it's about finding someone you feel able to talk to. My daughter (she has ME) was upset when her favourite GP left her practice but then found one of the doctors she had previously found unhelpful loves babies/young children, so she now takes her 7 month old with her.

Hope you get some help soon and do consider antidepressants, they have worked and continue to work for me.

stickywicket

I think with any nationwide organisation there are always going to be local differences. Some areas will be better than others and, in the case of the NHS, some will be busier and more financially stretched. Mind you, there is also the 'patient perception' factor. Some people expect a miracle every time (I'm certainly not saying you are one) and get very upset when their doc can't come up with the goods. But also, some docs will inevitably be better than others. Each will have their favourite area of expertise and I doubt OA will appeal to many as there's not a great deal they can do for it other than prescribe physio and pain relief.

The good news is you don't have to change your GP in order to see another one at the practice, Gracefully. We have 5 or 6 at ours and I always take whoever's available. However, if you wish to change practice – that's something a few on here have tried to good effect. I believe you just rock up at your new one and they do the rest but you'd need to google that to be sure.

What sort of things would you like? That's the problem with OA. There's physio and there's surgery. As daffy says, if there are things you'd like to ask for just ask. They can only refuse. For an OT you don't need a doc at all. Just google your local government Adult Social Care and ring them. And online disability shops have tons of useful stuff. I find a speakerphone an absolute necessity. We got an extremely cheap version and it works fine.

You might find Arthritis Care's Pathway Through Arthritis course useful. http://www.arthritiscare.org.uk/PublicationsandResources/Selfmanagement/pathway-through-arthritis

And / or their Chat4Change groups.

Gracefully

Thank you all, so much, for the replies.

It's difficult to give a full picture of our circumstances because if we did, the posts would be longer than War and Peace and probably just spread the doom n gloom.

It's a relief to get the advice on changing GPs because that has been worrying me. I had hoped that by trying to work with my GP she'd at least understand what life is like for me, but she's really the kind of "just go away and get better" person. And of course, OA does not always make that an easy task.

I have tried taking a very short list of notes to try and stay focussed with her, but she just keeps changing the subject or moving very briskly on.

I was supposed to be under an orthopaedic consultant, but have only just found out I was mysteriously dropped off the list and whilst of course things go wrong, there has been a definite and clear block to put things right, and it's that which is making things worse.

I keep explaining to everyone that I do understand that things go wrong, resources are getting less, but could someone just keep me in the loop, even if it's to say they cannot help me, so I know where I stand.

I guess I have the attitude that when you realise something has gone wrong and a person is affected by that, at the very least you acknowledge what has happened and apologise. To make someone go through the hoops of having to raise a formal complaint just to get a basic response is really not good.

I don't want to be doing this at all as it just adds to the strain.

As for what I would ideally like, I don't think it's much really, just more understanding and a bit of support such as having a check on my situation and to make sure my NHS notes accurately reflect my current health issues. Another course of physio may now not be so helpful because I'm so immobile, but I don't know. I keep up the exercises that I can still do - they're vital really or else I'd be a lump of wood.

Re the antidepressants, I've been there many times and more recently was on Amytriptaline for a long time.

For some people, it's something that works, and it did for me for a while helping with the back pain. I don't want to go into lengthy details but there were side effects, two of which I only found out after I stopped taking the stuff. And I do feel better for not taking it any more.

But my GP doesn't want to give me AD's for the pain, she wants to give them for anything that she does not want to deal with and when I need and ask for a different approach to being helped. They're cheaper as I'm so often reminded.

I'm managing my pain levels quite well, all things considered and with the help of a lovely therapist who works on my shoulders and neck which is my little bit of salvation and luxury.

Even having this place to chat has been so helpful - it's really just the little things that, when removed or don't happen, have a disproportionate knock on effect.

I was having a total brain fart over the telephone numbers thing because I got the wrong end of the stick about the 0344 ones. I thought they were the same as 0844 which I would be charged a hefty sum for, but after another lengthy online chat with the phone company, finally managed to get it into my little grey cells that they are not the same at all.

I haven't got a new phone because the one I have couldn't be more ........ bijou and workable for my home? It's essentially a little handset, no electrical connections and just turn it on, turn it off and redial.

But yes, I need to find one that has a loudspeaker option but doesn't need to be plugged into an electric socket.

Right - that's more than enough for anyone to read. keep getting sidetracked with phone calls and wandering off topic in my brain. I just went to post this only to find I'd got logged out. So I came back and shortened it a bit.

As5567

Sadly there seems to be no consistency in levels here in Wales. I was forced to move to a new doctor and hospital due to silly new rules and the difference in how things are run in comparison to my old hospital is a real eye opener. If I got into details I'd be here all day.

I'm sorry to hear you're having such a hard time just trying to get answers and the level of care you deserve. NHS complaints process sometimes makes you feel like you're just banging your head against a brick wall, it's a total nightmare just to have someone acknowledge you let alone take any action. If it's possible and I were in your shoes I would transfer to another GP practice, even if it meant travelling a little bit further it's often well worth it.

Do you see any sort of pain specialist? Gp's are not often the best at managing pain, and I totally get what you mean by not wanting more and more anti depressants. Yes they're used for pain management but personally I find they come with too many side effects. I paid privately to see a pain consultant after being told the NHS waiting list in my area is 2 years. I have only had 2 appointmets with her so far, 1 private and 1 on the NHS and it has made a huge difference, I would suggest asking to see someone just so they can give your gp a more clear picture on what types of pain needs to be managed rather than a gp just saying take these and come back in 3 months time, bye.

I hope you're able to sort something out sometime soon, let us know how you get on

stickywicket

Re the orthopaedic appointment – sometimes mistakes are made, things just forgotten and we have to be pro-active and chase them up ourselves. Ask if the request has been made and if not why not. You can ask to see your notes too.

As for physio, I'd say it's always good to see one if things have changed. There might be different exercises that would make a big difference. Also, with the best will in the world, we sometimes get a bit slack and find we've been doing them not quite accurately. Or that there's a different way to exercise the same muscles which is easier for us. That, too, can make a big difference.

What other approach would you like rather than anti-deps? What things does your GP 'not want to deal with'? Sorry, I don't quite understand. Do you mean depression, or pain, or something else?

Re phones. Ours have a plug in charger but the phones, once charged, can be taken anywhere in the house or garden.

Overall, it sounds as if you'd be happier with a different GP so why not go for it?