I have to sell my pony

[Leo Walker]

The problem is theres nothing to record. They dont say anything. I push them a bit and thats when we get the "poor prognosis" stuff which usually shuts me up. Theres always a fair bit of information in the letters to my GP. That is genuinely how I know any specifics. The only time I was really told anything was when my right eye hemorrhaged and I went mad at the complete hash 2 separate hospitals made of dealing with it, and thats when the 3rd opinion was wheeled in, who went out of her way to tell me that the hospital hadnt screwed up and despite the one hospital saying I needed an operation and injections they werent doing that and operations were bad etc etc. The hospital who said I needed the operation wont treat me and just refer me back to the other hospital.

Dont get me wrong, I know the underlying condition, I know that I'll be having PRP lasers on x day etc but thats it.

The senior eye consultant treats me and to be fair about the time of the second hemorrhage did try and get me some help by referring me to a different diabetes consultant, who did nothing, but at least he tried.

 

[Leo Walker]

My opticians do a field of vision test as standard so changing optician and paying for a test might work. I am heart broken for you I am diabetic so know the problems it brings with it Also pretty sure they can heal aneurisms with lazer but you may already have had that done

Ok so now I am absolutely furious! the optician lied to me. Flat out to my face lied. I am such a mug for accepting that on face value. It also means that I passed the test 4 months ago. I thought it was something special they did but having looked into it, its flaming well not.

I think I was just so fed up and disillusioned by it all I accepted it and just came home.

It doesnt matter in the big scheme of things now, I know that, but its been worrying me sick that I might be driving round when I shouldnt even though I felt fine doing it. I swear to god, one day its going to get too much and I am going to snap and go on a killing spree!

 

[Ambers Echo]

So so sorry LW. The only advice I can give is to echo Red-1 - never make big or irreversible decisions when in despair. eg quitting work, selling Bobbie.

Having worked for years in clinical practice and having been involved investigated complaints for the NHS I know that verbal kicking off is ineffective - all in a days work - but formal written complaints HAVE to be independently investigated. It is important to be clear what you are complaining about - specifically.

For example things like:

Lack of information
Lack of appropriate treatment in December
Lack of vision sparing treatment now
Unacceptable delays in receiving care.

Do you know or can you find out if the treatment they are not giving you is NICE recommended for your condition? If so, they should offer it. Your own doctors will not be able to fob you off - once it is official
they will have to follow the complaints policy. You may get a call asking if you want to address this informally but just say no to that. Say the phrase 'I want to make a formal complaint' in the letter so they can't pretend they did not understand that you are not just asking for info or expressing an opinion.

Re the benefits: PIP is a joke and they will probably turn you down initially. But a very large %age get that overruled on appeal. If you view it as a 2 stage process (apply, then appeal) it may be easier mentally to fight the good fight.

I am so, so sorry. It's heart-breaking facing these issues anyway -without the financial hardships, work related stress and concerns about Bobbie on top. Hugs. x

 

[The Fuzzy Furry]

LW, I've only just caught up with this, hugs x

Now, you know I've got similar, am over 95% blind in my right eye (light and dark only). It's an opticians entertainment on the scan they do, as so much has lovely dots from all the NHS laser work. No, it doesnt restore sight, but it stops the bleeds.
I had a right scare 2 to 3 weeks ago when noticed red through my sight, hustled from opticians to hosp for the usual zillions of tests, temp stopped driving, lazer next day after more tests and currently its stable.
I'm not saying there is any cure at all, but worth checking the laser out.

As to Bobby? What's your thoughts now, explore rda or blue cross, or do you really need money coming back in for your future (yes, some of us do, I get it x)

Its s scarey place you are in at present, sending love x

 

[DD]

So sorry, sending big ((((HUGS))))).

 

[blitznbobs]

Bobbie has to be sold. I'm losing my sight and I cant find any way I can keep a pony when I'm blind. I thought I had more time, but I lose my driving licence in 3 weeks and the prognosis for my vision is beyond poor. I'm suicidal with grief and misery and having a very hard time coming to terms with this, but it has to be done. The only thing keeping me going right now is focusing on getting her into the right home. I cant loan her as I cant have her coming back from loan at a future date when I cant physically cope with it which makes it harder. How do I find the right person? I dont care about money, I just want her in a long term home with someone who will love her and appreciate her.

I dont think I can cope with advertising her, I'm so heartbroken I can barely write this and theres no way I could speak to someone on the phone about her. I'm worried if I send her on sales livery I lose control of who she goes to, but maybe I'm just making excuses. I dont know what will happen to me once shes gone, I suspect I'm heading for some sort of breakdown as my life is pretty miserable with pain and mobility issues and I've relied on the horses to keep me going. I just dont really have anything else, and if I cant see there arent many things I will be able to do. Life barely feels worth living a lot of the time now but without the pony I have nothing and the thought of it is unbearable.

There is no help available from the NHS. They feel very sorry for me and dont know how I am coping, but there is no resources other than a community outreach nurse, who will be in touch in approx 8 weeks. I've not been able to go to work and quite frankly I dont care anymore. A few more weeks of working isnt going to make much difference. I'm in no state to manage it right now.

My friends are trying to support me but its not helping me having people say "oh you cant sell her, you love her" etc, etc. I've had to deal with lots of well meaning offers of help which dont change anything and just leave me saying thank you and having to explain it all over again upsetting me more and more every time. My partner also feels very sorry for me, but seems to be in denial that its happening. He seems to think this is because I dont really fancy going back to work after I've been on holiday I've tried to talk to him about money and how we are going to manage with one wage but hes avoiding it and i'm struggling to be able to talk about it. I think we will probably manage to keep the house, but its going to be a massive struggle financially so whilst I dont care about the money I get for her, I probably should.

I just dont even know where to start or how I can possibly do this.

Where in the country are you?

 

[Leo Walker]

LW, I've only just caught up with this, hugs x

Now, you know I've got similar, am over 95% blind in my right eye (light and dark only). It's an opticians entertainment on the scan they do, as so much has lovely dots from all the NHS laser work. No, it doesnt restore sight, but it stops the bleeds.
I had a right scare 2 to 3 weeks ago when noticed red through my sight, hustled from opticians to hosp for the usual zillions of tests, temp stopped driving, lazer next day after more tests and currently its stable.
I'm not saying there is any cure at all, but worth checking the laser out.

As to Bobby? What's your thoughts now, explore rda or blue cross, or do you really need money coming back in for your future (yes, some of us do, I get it x)

Its s scarey place you are in at present, sending love x

I've had laser, lots and lots of laser. Thats the problem, there is no room for anymore in the left eye. Theres one more session in about a week for the right eye then thats it. Game over.That would all be fine but the right eye has an existing hemorrhage from February which is still bleeding and has actually torn my eye, and the left eye started a tiny bleed a couple of days ago. Theres more new vessels growing all the time. My blood sugars are reasonably controlled. They arent perfect but I work so, so hard at keeping them stable. it seems to be making no difference though.

I did complain to PALs which is where the third opinion came in. I havent actually looked at the NICE guidelines for this, every other flipping thing wrong with me, but not this. I'll do that now. Thats such a good idea I cant believe I didnt think to check!

If/when shes sold I need the money from her. I dont care about it, but I'm not the only one involved in this. My partner actually bought her and contributed heavily to having her broken so its not really my money.

 

[Ambers Echo]

I did complain to PALs which is where the third opinion came in.

Did you ask PALS to make a formal complaint? They can help people to complain or they can offer advice/liaison which is a step before formal complaint. It may differ round the country but IME the only thing that really got things moving was a formal complaint or a letter from an MP. If you have an active local MP would they write on your behalf?

In our NHS trust we had a policy that an MP letter required a written response within 48 hours - that was never enough time to actually investigate whatever the issues were so the upshot was basically give the patient what he/she wants if at all possible! I don't agree with this approach but it is the way it is.

In your situation I would use every protocol and procedure but you need to know how to trigger them. Going to the press is pretty effective too. Trusts don't like that very much either and will generally try to avoid that if possible.

 

[babymare]

I have read all the comments and I'm shell shocked. You show yourself so strong. I have no advice to give that's already given but I stand in awe of you. You are a fantastic person xx

 

[SEL]

My blood sugars are reasonably controlled. They arent perfect but I work so, so hard at keeping them stable. it seems to be making no difference though.

When I was on the medical trial the consultant told me some people are more susceptible to problems even with exceptional control - others can have fluctuating blood sugars for decades and have no issues. He compared it to those 90yo who have smoked since their teens and never get a hint of lung problems. It's the genetic short straw.

I hope they can find something to help you keep your sight. Even a small amount. We'll crowd fund if it needs to be private.

 

[siennamiller]

Leo, I’m so so sorry about this. There’s nothing I can really say, but I wanted to send you a hug.

 

[EventingMum]

Big hugs from me too.

PIP is a joke, I'm disabled and after many years caved in recently and applied. I couldn't walk from the car park to the assessment centre so was in a wheelchair but they turned me down for the mobility benefit but granted me the other part (I forget what it's called) on the basis I have weak hands and a tremor so can't cook meals from scratch (sharp knives are a no go) and because I self cathaterise. As far as I'm concerned my biggest hindrance by far is by mobility and when I do walk I need two crutches and yet someone I know who walks further than I can unaided but has some arthritis gets mobility payments. There seems no rythme or reason to the decisions.

 

[Leo Walker]

Its knowing how to work the system and not giving up. I guess when the couple of hundred quid is that important to you that it changes your quality of life, you keep fighting. It would be useful for me, it would pay for the osteo and physio and contribute to taxis etc, but while I'm working I can do without it, and I'd rather that than go through it. But I'm in a place now where I need it in place and its almost certainly going to take months, so I best get on with it.

I've had a screaming row with the neighbour this evening. I'm not proud of myself and I should not have done it, but hes a vile little man who has been sticking anonymous threatening letters through the door and coming round after my partner goes to work, and tonight he stuck his head over our fence and started and I'd had enough. All over some tiny, fluffy little chickens. You'd think I had pet velociraptors in the garden the way he carried on.

I'm feeling remarkably cheerful now though, I think its done me the world of good to tell someone to do one and leave me alone!

 

[PeterNatt]

I am very sorry to hear of the situation that you are in. May I suggest that if you have not already done so that you get a referral to Moorefield Eye Hospital in London.

 

[Remi'sMum]

LW, I’m so sorry to hear all, I truly am. What a b*tch life can be.

Please don’t take this the wrong way but your mental state at the moment (very understandably) doesn’t sound good. You sound more upbeat now but your first post was quite frightening to read, you sounded so desperate.

A friend sent me this link only tonight. I know that not everyone takes kindly to the suggestion that ‘talking’ might help you feel better, but these people are trained to help in a crisis and it sounds like you’re at crisis point. You can’t figure out what’s best for Bobbie with your head all over the place.

Forgive me if any of that ^^^ sounds patronising, that’s totally not my intention. I’ve got no practical advice for Bobbie or benefits or tribunals or anything like that. But sending you MASSIVE virtual hugs.

https://www.giveusashout.org

 

[Leo Walker]

ok, so I am trying very, very, very hard not to lose it. My consultant has flat out lied to me. He has told me that there are no further options for treatment. They just shrug their shoulders and sadly tell me its a poor prognosis and theres nothing else they can do over and over.

I saw the optician in the autumn and he panicked and sent me straight back. He said my retina was in the process of detaching and all sorts of other things and it was an emergency. The hospital made out like he was being dramatic and told me nothing was wrong. They told me the scarring was holding the retina down, everything was fine. So I went away. I went back 3 more times I think as it wasnt right and I knew something was happening. They sent me away everytime. In Feb my right eye effectively spilt open internally and caused a huge bleed.

I went to eye A&E at a different hospital for a second opinion. The second opinion doctor told me I would need an operation to fix the hemorrhage in the right eye and to do more laser treatment while I was unconscious so they could reach different areas etc and probably further ops down the line. They wouldn't treat me and referred me back to the original hospital where I made a fuss and a 3rd opinion consultant was found. He agreed with the original one and told me that no such thing was needed and I could have another round of laser treatment and that would sort it, so I let it go. They were very convincing although thinking back they did keep correcting me when I was saying it was the same as the previous hemorrhage, which was caused by a burst blood vessel.I just never clicked until a few minutes ago

Then the left eye started bleeding and we went right back to "poor prognosis" and "no further options" Which I accepted again

Until I looked up the NICE guidelines and in the process came across this from Moorfields

In proliferative diabetic retinopathy, bleeding can occur in the retina and gellike fluid that fills the eye. This blood usually clears on its own within six months. If this fails to clear you may need surgery to remove the blood. In advanced proliferative diabetic retinopathy, scar tissue can form in the retina. This causes the retina to pull away from the back of the eye (retinal detachment). Surgery will be required to remove the scar tissue and repair the retina.

I have extensive scars, the scarring has pulled the eye apart internally and caused the bleed in the right eye. The scarring also means I cant see fine details as I cant focus my eyes properly. They told me nothing could be done.

What the hell do I do now? I am not going back there, the other local hospital wont treat me and just refers me back to them. I cannot believe I havent checked this and I cannot believe I just found out now at nearly midnight on a Friday night when I am own with no one to talk to, and cant do a damn thing until Monday. I suspect most of this post doesnt even make sense, I just needed to get some of it down before my head exploded.

 

[Leo Walker]

I am very sorry to hear of the situation that you are in. May I suggest that if you have not already done so that you get a referral to Moorefield Eye Hospital in London.

I've seen the consultant from Moorfields, she came to my local hopsital to see a few people back in the summer. She didnt seem particularly interested to be honest, so now I'm a bit wary of them as well

 

[Remi'sMum]

It sounds like a very frank conversation with your GP may be a place to start. Wrote down what you just wrote above in bullet points so you’ve got an idiot-proof timeline of events. Take that to your GP and demand to know what is going to be done. CAB may also be able to advise. I wish I had more/better advice, but I don’t. I really really feel for you x

 

[Michen]

I've seen the consultant from Moorfields, she came to my local hopsital to see a few people back in the summer. She didnt seem particularly interested to be honest, so now I'm a bit wary of them as well

Disappointed to read this as my mother also has some serious eye issues, just in one at the moment and moorfields have been wonderful. Though the op wasn’t successful.

So, so sorry. Xxx

 

[G&T]

ok, so I am trying very, very, very hard not to lose it. My consultant has flat out lied to me. He has told me that there are no further options for treatment. They just shrug their shoulders and sadly tell me its a poor prognosis and theres nothing else they can do over and over.

I saw the optician in the autumn and he panicked and sent me straight back. He said my retina was in the process of detaching and all sorts of other things and it was an emergency. The hospital made out like he was being dramatic and told me nothing was wrong. They told me the scarring was holding the retina down, everything was fine. So I went away. I went back 3 more times I think as it wasnt right and I knew something was happening. They sent me away everytime. In Feb my right eye effectively spilt open internally and caused a huge bleed.

I went to eye A&E at a different hospital for a second opinion. The second opinion doctor told me I would need an operation to fix the hemorrhage in the right eye and to do more laser treatment while I was unconscious so they could reach different areas etc and probably further ops down the line. They wouldn't treat me and referred me back to the original hospital where I made a fuss and a 3rd opinion consultant was found. He agreed with the original one and told me that no such thing was needed and I could have another round of laser treatment and that would sort it, so I let it go. They were very convincing although thinking back they did keep correcting me when I was saying it was the same as the previous hemorrhage, which was caused by a burst blood vessel.I just never clicked until a few minutes ago

Then the left eye started bleeding and we went right back to "poor prognosis" and "no further options" Which I accepted again

Until I looked up the NICE guidelines and in the process came across this from Moorfields



I have extensive scars, the scarring has pulled the eye apart internally and caused the bleed in the right eye. The scarring also means I cant see fine details as I cant focus my eyes properly. They told me nothing could be done.

What the hell do I do now? I am not going back there, the other local hospital wont treat me and just refers me back to them. I cannot believe I havent checked this and I cannot believe I just found out now at nearly midnight on a Friday night when I am own with no one to talk to, and cant do a damn thing until Monday. I suspect most of this post doesnt even make sense, I just needed to get some of it down before my head exploded.

I’m really sorry, that is truly terrifying to hear. It’s awful to say, but it actually doesn’t surprise me any more as doctors seem to be so unaccountable. My mum was left disabled for two years from badly executed surgery for a leg break, again and again we were told no this is all normal everything was done correctly you’re just one of the unlucky ones. Eventually, only after a strongly worded written formal complaint (which another poster mentioned earlier) she got an appointment with the senior consultant who said oh yeah I can just do another operation to remove some metal and sort that out, a month later she was almost 100% better. If she hadn’t fought tooth and nail though she’d just have been left to suffer.
Keep the pressure on them, a written complaint, demand answers. good luck x

 

[Jinx94]

I've seen the consultant from Moorfields, she came to my local hopsital to see a few people back in the summer. She didnt seem particularly interested to be honest, so now I'm a bit wary of them as well

Sorry for not replying to your pm yet, exams coming up this week..

I know it would be a bit of a trek, but is there any chance you could get a referral to Walsgrave (university hospital)? Whatever they're dealing with, they tend to be very, very thorough. Might be worth a shot? Xxx

 

[ozpoz]

How can anyone be upset over tiny chickens! Twit! Send them to me! I love pekins.
Take it all slowly and methodically.
While I think the RDA is a fabulous organisation, the last one I visited made me feel quite sad for the ponies. (Several had no muscle, were lame and looked unhappy and uncomfortable).

 

[Spottyappy]

I haven’t read all of the posts to this Leo.
However, I volunteer for Bucks Vision, who employ blind people, as well as supporting them.
I’m not sure if you’re able to get help from them (and maybe a job when one becomes available), as I think you are in Northampton.
However, if they can’t help, they likely will find someone who can.
Here’s their website https://www.bucksvision.co.uk/
I would imagine Northampton has similar too.
At this stage, I know you will be incredibly frightened, and upset. However, the activities offered by Bucks Vision show that sight loss is not the barrier we all think. They have organised events, and the lady Who is blind herself but “in charge “ of volunteers even does cycling.
Pm me if you would like, as I think you know I’m (struggling with it too) facing the same future as you .

 

[gunnergundog]

Have visited this thread a few times and wanted to post something but not really known what to say. I have no contacts or experience that may help you. All the usual platitiudes are trite. Life stinks at times.

Fingers crossed for you.

 

[RHM]

I am so sorry to hear this LW it’s a terrible situation to be in. I just wanted to jump in as you stated that the treatment they are refusing has NICE guidance. If it has NICE guidance funding is MANDATED. They cannot refuse treatment due to cost. If the trust refuse to pay for it they just need to complete an individual funding request form. Don’t let them palm you off the right treatment because of its cost, quite frankly not only is it unethical it is illegal. You can also ask for a referral anywhere in the country, it might be worth asking your consultant to refer you to a tertiary specialist centre. I wish you all the luck in the world getting this sorted! Sod the neighbour! Sometimes letting off a bit of steam does the world of good!

 

[The Fuzzy Furry]

LW, if you can get a referral to Prof Taylor at Moorfield, he really is the man to see (no pun intended!) He is the one who actually listened to me, sorted quick treatment and saved my only working eye. I'm very lucky, he comes down on a Friday to my County hospital for consultancy on specialist cases.
Worth trying xx

 

[blodwyn1]

Moorfield have a 24hr a and e dept for emergency treatment of imminent sight loss. You are not supposed to use it for second opinions but it might be worth a train ticket to London.

 

[ycbm]

LW you have understandably lost faith in the judgment of the two consultants who have told you that nothing more can be done. Is there any possibility that you can pay for a private consultation with someone else, who at least will take half an hour with you to explain exactly why nothing can be done if that is the case, and not be time pressured and rushing. If something can be done, they can then prescribe NHS treatments.

It shouldn't be necessary, but it's available for people who are lucky enough to be able to afford it, and this is an emergency.

Cost around here seems to be £200-250 for a consultation.

 

[Ambers Echo]

I echo what YCBM says - my daughter started having seizures. NHS consultant after seizure 4 said 'epilepsy' - medicate and live with it. But I knew that seizures are meant to be investigated. Epilepsy was the most likely answer but not the only one and other more sinister possibilities should have been excluded which meant expensive investigations. We paid £300 for a private consultation with someone who was also a top NHS doctor (some fully private docs are rubbish and went private because they are unemployable on the NHS - you need to make sure you have a consultation with someone whose credibility can't be questioned) - and he wrote a letter with his list of recommendations which the NHS consultant then carried out. Grumpily and grudgingly but that did not bother me! I also echo SEL's suggestion for crowdfunding at least for an initial consultation if the £300 or so is just not findable.

 

[sunshine100*]

Just caught with up with reading all this LW.So sorry to hear about your eyes and the worry about Bobbie. Can we you all crowdfund for you to get you the best private eye surgeon?
I know your concerns about getting the right home -they will be no one good enough, all the work you have done with her,you don't want her going to someone who keeps her cooped up in stable all day.
So one thought I did have and its only a suggestion is putting out with your retired one that way you know where she is and she will be looked after.