Disabled people
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Broad Independent Treatment Plan?

OverlyAnxiousOverlyAnxious Member Posts: 1,018 Disability Gamechanger
edited June 2020 in Disabled people
Morning all,

I don't know what to title this, or where to put it on the forum, which is quite fitting for the topic really! :D 

I feel like I have now been given some DWP lemons in the form of PIP...but still don't have the recipe for lemonade.  I've been struggling financially for a while, especially over the last couple of years, which has had a major effect on being able to attempt any treatment.  I now have the money to work on my health issues - whether that's using more fuel, affording better food, being able to pay to visit places or even paying for private treatment, etc.

However, I have absolutely no idea how to proceed and just keep hitting dead ends with individual services.  Every treatment seems to be stopped by another issue.  But because every service only focusses on one small area, I just get told my issues are too complex and that I'm being discharged as there's nothing more they can do.

What I'm looking for is a broad service, independent of any individual health area, that can take all of my health conditions into account, both physical and mental, to create a suitable plan of action (or a 'roadmap' if you like!) so that I'm not trying to run before I can walk.

Does a service like that even exist?  If it does...where do I look for it?

Oh, and importantly it really needs to be text based, ideally via email or webchat...but that could be one pro of the current crisis!  Verbal never works for me, I can't use phones or face to face adequately which is one of the main reasons I've never been able to get any help so far.  I should also add that my Doctors surgery insists on F2F or phone so they have almost no understanding of my issues despite having tried to write a couple of letters to them.

Thanks


Replies

  • Chloe_ScopeChloe_Scope Scope Posts: 10,680 Disability Gamechanger
    Hi @OverlyAnxious, it must be disheartening to constantly be told you are too complicated and that they cannot support you.

    Unfortunately I'm not sure what to suggest. However I hope others are able to add something. 

    Have you tried person-centred therapy?
    Community Partner
    Scope

    Tell us what you think?
    Complete our feedback form to help us to improve your community.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,018 Disability Gamechanger
    edited June 2020
    Have you tried person-centred therapy?
    Thanks Chloe.  I haven't tried that, I've only tried 'normal' CBT so far, but only been offered face to face or phone which was never going to work for me anyway.  At the most recent mental assessment I was just told CBT wasn't right for me and that they wouldn't put me on the waiting list again but also that there was nothing else they could offer.  I was told about webchat CBT by an online acquaintance recently, but that's not offered by the Wellbeing service in my local area.  I could try and find a private place offering webchat CBT but don't want to waste the money if that's not the right place to start.

    CBT isn't likely to help currently as I physically can't stay in situations for long enough for the anxiety to drop because I have to use the loo urgently or come over too nauseous and dizzy etc.  I can fight the mental discomfort, but not the physical issues, which may or may not be anxiety triggered.  So I thought getting my diet sorted out might be a better first step to help reduce the IBS & nausea, but the dietician service say they can't help because my diet is too restricted by the OCD & health anxiety.  I can't have the GP do any tests to decide whether there's something physically wrong or not either.  So I'm just going round in circles.  I also really need to get my teeth sorted out but can't get into a dentists surgery, let alone anywhere near the chair at the moment.  And I've got some other physical issues that could still be fixed, but I'm not able to cope with medical environments and people and medical procedures.  I know there's no quick fix, and it will take a lot of time to get anywhere near a normal life from the situation I'm in right now, but that's why I need a roadmap set out to decide which order things need to be done in.  I don't beleieve that I can only person that needs something like this.


  • 66Mustang66Mustang Member Posts: 3,721 Disability Gamechanger
    edited June 2020
    Sorry I can't really help but just to say I have had similar issues in that I don't just have one problem, I have a handful of different ones, and they all make each other worse. Dealing with one in isolation I think would be easy but dealing with one at the same time as the others is difficult. When working through treatment I always end up at a "checkmate" situation where I need to sort out something else before continuing with the treatment, but can't sort that out with the first issue still present!

    Though, in contrast to your experience, I have found that doctors and specialists have been helpful in that they will listen to and offer advice on my other problems, not just the one I came to see them for.

    I don't really have anything to suggest that you likely wouldn't have thought of already sadly. I would think maybe the first step could be to tackle the issues preventing you from seeing someone face to face, then you could get better help? I know that is easier said than done.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,018 Disability Gamechanger
    66Mustang said:
    Though, in contrast to your experience, I have found that doctors and specialists have been helpful in that they will listen to and offer advice on my other problems, not just the one I came to see them for.

    I don't really have anything to suggest that you likely wouldn't have thought of already sadly. I would think maybe the first step could be to tackle the issues preventing you from seeing someone face to face, then you could get better help? I know that is easier said than done.

    Do you find you're able to explain things adequately in person?  People never seem to understand me even when I do force myself into F2F situations.  I spend hours before the event trying to work out how to phrase things and even take written letters but still never get it right. :(  


    The issues with meeting face to face are the OCD, agoraphobia and IBS...  If I could solve of all those I would no longer need the specialist input! :D  

    In hindsight, I think this is why I scored so highly for mixing with people on PIP, they read between the lines of what I actually wrote and realised that it's virtually impossible for me to deal with anyone in person, regardless of who they are.  So credit where it's due if that is how it happened!

    The OCD & agoraphobia won't change until I can address the health anxiety.  The IBS may never change.  Although there's obviously some anxiety element to it, lockdown has proved that it's definitely not all anxiety triggered...it's still bad on the days I do nothing at all, just with an increase on the days I do try to go out.  I've cut out even more food to try and stop it but still nothings making any difference, I'm literally just having boiled potatoes and a bit of low FODMAP veg or plain ham 3 days a week now but still my stomach & bowels are not happy with it!  It's so frustrating as it means I can't plan or prepare for it but know it will be an issue at some point at least once every day.

    If there was one thing I could have fixed right now it would be the health anxiety.  So that at at least I could cope with the IBS even if I can't fix it...  But can anyone help with that online?  I don't even know what the help would be for that...
  • 66Mustang66Mustang Member Posts: 3,721 Disability Gamechanger
    I do find it difficult explaining some of my issues but I find most people I meet roughly understand what I am trying to say - maybe not completely. I do the same as you though as I am better at writing things down than having to say them on the spot. Some people have misunderstood me in the past so I know how frustrating that can be.

    It should stand to reason that if your issues are ones that prevent you meeting people in person, the treatment should be available without having to meet in person! Otherwise, it is almost like being offered a telephone appointment to cure your fear of using the telephone!

    Sorry that I can't help more. Have you had any success in finding anyone with similar issues? I have found that helps a little bit.

    As for the private treatment, I have never done anything privately, always NHS, but I have researched private services in the past and always thought that they don't seem like good value for money. Then again if it helps I guess anything is good value for money! I'd pay any amount of money to get better but I am totally unwilling to pay for even one session that won't help!! I am always scared to pay for something that only has a small chance of helping. They should do something similar to "no win no fee" law services like "no cure no fee"!
  • OverlyAnxiousOverlyAnxious Member Posts: 1,018 Disability Gamechanger
    66Mustang said:
    Otherwise, it is almost like being offered a telephone appointment to cure your fear of using the telephone!

    Sorry that I can't help more. Have you had any success in finding anyone with similar issues? I have found that helps a little bit.

    As for the private treatment, I have never done anything privately, always NHS, but I have researched private services in the past and always thought that they don't seem like good value for money. Then again if it helps I guess anything is good value for money! I'd pay any amount of money to get better but I am totally unwilling to pay for even one session that won't help!! I am always scared to pay for something that only has a small chance of helping. They should do something similar to "no win no fee" law services like "no cure no fee"!
    Lol...that first point made me laugh as that's exactly what keeps happening!  The first time I went to the GP about my constant fear of illness I was just prescribed Sertraline (SSRI antidepressant) and told that it would make me nauseous or vomit for the first 2 weeks...  I'd already spent my entire life avoiding illness at all costs, yet they gave me pills that would make me ill...  Needless to say I couldn't take them!

    The next time I was just told to phone the Wellbeing service - after telling them I couldn't use phones.  I did attempt it and got misdiagnosed over the phone which led to getting the wrong type of CBT therapist who was no help at all.  I was first expected to travel 10 miles to meet him which I couldn't do at all at that time.  So he moved our sessions to phone only and I couldn't answer...so they discharged me assuming I was better and no longer needed the help!

    More recently I wrote a letter to the GP, stating that I couldn't visit the surgery due to contamination fears (amongst other things) but needed some remote advice...so they sent me a hospital appointment for a dietician!  As if a hospital would be less contaminated than a surgery?

    Again I attempted it, mainly because I couldn't phone to cancel and didn't want to just not to turn up lol.  When I got to the dietician I basically said I can't cope with the amounts that are coming out...so they tell me I need to eat MORE!  Now I'm no expert, but putting more in is going to cause more to come out isn't it...  Honestly, you couldn't make it up...I sometimes wonder if they're all doing it for a laugh! :D  It must be me though, I know other people do get a better experience with the health service.


    Sadly, I still haven't found anyone with similar issues.  I do know quite a few people with more mild social and general anxiety, but they are still able to work and live fairly 'normal' lives overall.  I also know someone with contamination OCD, but without agoraphobia or IBS.  And I know a few people with IBS symptoms (from worse conditions like Chrons & CF) but without the anxiety side.  I still haven't found anyone even close to having the combination of problems that I do though...I really wish I could!  I had hoped to get to some more car shows and meets this year in the hope of meeting some local people, ideally some others with similar issues, but Corona has obviously stopped that, even if my guts hadn't!  I don't know where else to look for people...  I mean, I've been on here for over a year now, tried Elefriends for a bit, even tried a group OCD support session and still felt like I didn't fit in there. 

    Regarding private treatment, I'm really not keen on trying it either, but I can't continue like this so if I have to pay my way out of it then I will, that is sort of what PIP is meant for anyway and I wouldn't have got it without these issues.  I could use the backpay to buy another car, but what's the point when I can't drive it anywhere?  I am reluctant to try anything private unless there's a very good chance of it working though, and I haven't been impressed by what I've seen so far.  Mostly just people profiting from others misfortune and desperation without being bothered whether it's successful or not...



Sign in or join us to comment.