Can you help me write a letter please?

[IAmDoneNow]

I have sent off what needs to be to the ombudsman. I have one set of tests left and I am done. I have kept going for years for the children and for the truth. There is nothing to go on for now.

Can you please help me write some letter for my children please.

I want them to know they are loved and this was not their fault, that I can't go on living anymore.

I have been treated badly my whole life, never been loved or cared for, had little kindness shown to me, been very ill physically and dismissed both myself and for them. I nearly lost them due to domestic abuse and medical and cafcass neglect, the court is now aware and a false accusation of munch by proxy, the court didn't agree and the children were left with me. Court papers out of context were released without court permission and I was witch hunted for years by everyone except social services. We got no help and were treated like sub humans.

I dont' feel safe anymore, I can't trust anyone, I am scared everytime I open post, hear the phone, meet professionals, there is a knock on the door. I feel so alone.

I am physically unwell, there is no cure for most of it, no treatment.

I have nothing to live for.

I am dragging my children down. They will do well with the money I can leave them and the freedom that will give them, there is nothing more I can do for them.

I don't want any help, I want to be left in peace, help is never help it is abuse.

My plan is not to use some medication that keeps me alive once I have had these tests, and to just die that way. I am holding out for the tests as they may help with the children's treatment.

Have you ever called Samartians? I have many time over the years, they get bored of you talking to them after an hour they try to get you off the line. There are also some not nice one's on the lines. There are some nice one's even they want you off the line after an hour. It is so hard you work yourself up to talk to them in the first place and they want rid of you when they are bored, and when they have extracted your story and they are fed up feeding off your pain.

I need a Mum, I need a Dad, I need people and I have done all that with nobody, at least my children will know they were loved, I was alone.

I had nobody to love me, I had no body to hug me. I had nobody to do anything for me. I had to go into that court on my own, I was not able to get legal aid I ran out of money and still have debts from when I had legal help. I had to sit in that court all those times on my own. I had to go to those meetings on my own. There was no advocacy where I lived. I can't get advocacy where I live now, I tried believe me. I had to face all that hatred from the barristers, the solicitor letters, the abuse from the ex, the abuse from professionals all on my own. I then had to struggle with all our health needs at home with no help as it was apparently all in our heads and not real. I had nothing and nobody.

Trust me it can't be worse than that, they will know they were love and have letter and they will not be told it is all in their heads, they will have evidence that it was not and they will not have to go through what I did and they did, they will then get all the people who abandoned us back in their lives and they will be in a better place with people who are well and able to do things for them I can't that they need. They will be better off.

Nobody will want to come back in their lives when I am around, they will be too ashamed and their guilt and pride won't let them. If I am gone they can come back into the children's lives and wont' have to face me. The children will be better off.

I don't know what to say that can help, what you have gone through - and are still going through - is way outside my experience. I wish I could hug you, I wish I could make you see how your children will absolutely NOT be better off without you.

I truly hope you find a way through this.

I am one person and I am broken in every way imaginable. If I am not here my children will get a very big family back. Who will claim they didn't know and how could they have known and all will be well with everyone. If they even tried to come back if their pride did I would rip them to shreds and pull them up on every thing they did, and they would not want to hear it so the children would never have them back as they don't want to have anything to do with the children as they don't want anything to do with me.

If I am not around the children will have no choice other than to be around those people and they will not be as bitter as me, they will not know that those people did know and did let us down and they will have a different life to the one I can give them. I don't want them looking as me as they say they do and thinking they have no future, I want them to be around people who are not broken and depressed who are fit and who can do what they need and fight what needs fighting I am done. I did all I promised myself all those years ago I would, I got them to the this point, and I can't do anymore. for them or me.

It is not just me that is scared now, maybe the children will not be scared when they are living elsewhere. My oldest told me the other day they are scared every time someone knocks on the door, in case it is social services. This is now way to live.

Hi OP,

We're so sorry you're going through such a difficult time.

We hope our webguide can provide some useful contacts for you to speak to about how you're feeling.

Thanks Amy.

So sorry to hear you are feeling like this. My mum committed suicide when I was a baby. I have had a horrible childhood because of it and really wished I'd had a mum. It has affected me so much that I suffer with major depression.
Your children need you. They won't be better off. I remember in my darkest days I couldn't see clearly & decisions & thoughts that I had then I can see now that I was really ill.
Please try & call the Samaritans just to have a person in RL to talk to.

I woke up feeling so much better today. I haven't cried today, I had red swollen eyes all weekend. Thanks for listening to me and I am sorry for upsetting you.

I am feeling very unwell today physically, though so much better depression wise.

I'm glad you are feeling much better. Rooting for you and your kids for a happier future. You sound a really nice and caring person who has had a bad time. I hope things go better for you now xxx

Thanks, I am glad I have felt better today emotionally, it was horrible feeling like that the weekend. Thank you to those who posted here and spoke to me via pm. I have found it all shocking and sad regarding the death today of Peaches.

Very low again. So low, I nearly lost my children and it wrecked our lives , over DV and medical neglect and professionals not doing their jobs properly. They left us ill, bullied us and I can't get past it. I live with the consequences day in day out.

I can't get past it as it keeps coming up all the time the consequences of it all. I am so ill and struggling with ill children all because numpty Dr's got things wrong.

Not helping getting emails and letters from bodies who are wanting more info, not understanding me and querying things.

I had a little cry and I am going to watch some TV/MN and have something to eat and a cup of tea I think. I need to put my feet up and rest, doing things is not good for me it gives me time to think and when I think I think about what they did and it hurts. I can't stop thinking about what they did as every move I make it hurts and I feel ill so I get upset that they left me like this, and tried to make out it wasn't real, and made me feel bad about myself all that time and suffer all that time.

Hi OP

I feel I do know a little of where you are coming from regarding the medical stuff. I too had physical problems that were misdiagnosed as being 'all in my head' or mental health issues. The condition I had was rare. It got worse. I went to A and e and was given a mental health assessment when i was really, physically shaking and ill. they sent me home, and I had to go back in a week later when I finally had an operation which they won't talk with me about but apparently was life saving. In the discharge summary it glosses over how bad things actually were and advises the GP for follow up to refer me to psychiatric services. Some things i heard from the staff in the hospital were dreadful as they thought it was a negligence case and they despised me and I have had such awful dismissive contacts with doctors and surgeons...

I think they problem is that where they may have misdiagnosed someone they are SO worried about it being negligence they try and cover up the truth and blame it one mental health- that is my experience anyway.

It is very hard. I know I did suffer (and do) with mental health stuff too that was brought on by the physical condition- however still need treated for both. It is hard to get treatment when they don't want to show up what you actually have.. before I got so ill that time I even had a CT scan where they couldn't use contrast then they tried to say it was 'normal' well I did my own research and found it wouldn't have shown anything anyway due to them not using the contrast- well it obviously wasn't 'normal'... Now I don't trust that hospital and have asked to be referred to a different hospita to a consultant in the area I suffer with physically. The first think he said was so dismissive and he commented on my 'chequered past' it was really tricky especially if like me you are depending on them to help you if you get sick or need another operation.

I too, became suicidal at one point as I just couldn't take it anymore. In my case I had consulted a Clinical negligence solicitor who was keen to take on my case- i thought this was the only way I was going to get treatment- however when it came to writing a witness statement and going through the process of it it all stressed me out too much and my husband managed to get the solicitor to stop. (however we had to pay there costs whereas if they said we had continued it would have been covered by their insurance)

Anyway, sorry for such a long message but I think i do understand where you are coming from. I think the thing is that doctors can be very defensive and cover up for one another. I suppose this is not helping, but I have had friends and relatives all believe the doctors too about it being in my head and it is awful and I understand. I nearly died!

I am trying to deal with it now and really struggling with trusting the doctors and in my case trying to find out as much as I can about the physical condition.. I actually am seeing the consultant tomorrow and have written a brief message about if i need another emergency operation having good pain relief etc. It is so hard as i find they don't want to tell me much about it which increases my anxiety.

I had rare kind of bowel obstruction and then further small bowel obstruction all of which was misdiagnosed some as being anxiety / panic related. I don't know what it is you have but can you find out as much as you can in order to help your children?

I am trying approaching the doctors in a calm, way as if i want to help in futire to stop things going wrong again, and hopefully am not referred to the right consultant (at the new hospital) and have just changed GPs...

Can you try to put the past behind you? Hey at least they are doing the tests! The most you know about your condition the more you can help yourself and your children. I now have terrible adhesions, scar tissue from the previous surgery and the fear of another obstruction is always with me. if they had treated me sooner things may have been different, however I not have no choice but to try and deal with it and try to build up some kind of a trusting relationship and move forward. I hope some of tis is of help and not too negative.

Maybe you can find a good GP who will help you with this?

Apologies for the typos I wrote that very quickly!

Sorry for the struggles you had too LovelyBath.

I just can't bring myself to go to the GP. I had an appointment today and I couldn't go, I just can't face anyone messing up anymore.

I have learned a lot about our condition lately and took my children to see those with the most up to date knowledge who are making the leaps in medicine.

I had to sit through an appointment with a Dr who is taking over my child's care, who has done some homework, no where nearly enough as I know more than they do. They were giving conflicting advice that we had from others. I only mentioned the bit that I have paper evidence that doesn't match, didn't say to him, just questioned it, he didn't like it at all. It was not all bad, they had their heart in the right place, just they don't have up to date knowledge and they are not quite right in their care, what can I do about it, nothing is the answer until this new Dr gets some reports through and we are all having some more tests so I will get our reports on my child's medical records, hopefully this Dr can then learn a bit and then get more up to date with things.

It is just horrible, when you know they are wrong and you are scared to say anything or they will go after you.

Yes it is good you are at least having tests, i think you are right it is scary but sometimes it is up to the patient to find out as much as they can about the condition. I have found that also in my case.

Yes they don't like it at all if you go in pointing out errors, i don't think it helps anything. i did this too and don't anymore... as you said they have their heart in the right place

i think you have been through a lot but can you try and think, well the more you know the better. It may help your children in the future with treatment if they have the same thing. Try and take the help they offer you yes they may make errors but if you're not around to do the research they may make errors with your children too- you need to be here to stop that happening- don't let them beat you! x

I just don't want anything to do with run of the mill Dr's anymore, they don't know what they are doing and they get nasty if you realise and point it out. I just don't want anything to do with any professional, they have mostly been horrible to us.

Yes I totally understand. I too am wary of getting involved with my new GP for fear of them fobbing me off. What you can do is go for your tests, research your condition and get aware of it- my friend has MS and she does this as even the specialists she's been referred to don't know certain things. For example she has a neurologist but they don't specialise in bone health and no-one warned her she was at risk of bone fractures. She knows now due to having had a fracture and is now being sent for bone density scans... there is a lot you have to research and if now you can get fobbed off.

Did you know you have the choice of who you get referred to via the NHS Choose and Book service? At first my GP secretary kept saying I had chosen the local hospital via it and so couldn't change this, however this was wrong and i got them to take that hospital off my 'choices' and add some others. There is a website I have found helpful called HealthUnlocked- they have forums for almost every kind of condition, I wonder if they have one for yours. It might help to speak to otjers who have had the same diagnosis. I found that lots of people had had a hard time getting adhesions diagnosed despite them causing bowel obstructions, and been told things like they had IBS or it was 'in their minds'...it made me feel a bit better that I was not the only one with the condition and at least the doctors realise i have the adhesions (even if there's not much they can do about it...

You deserve to get good treatment and care, try and remember that, despite what has happened in the past. I too felt very let down and angry..it has taken a long time, perhaps a year for that to go..You can't change the past, the Ombudsman will look at your information just let that go for know and concentrate on getting the treatment you need (I am saying this as i got bogged down in the complaints system which I found a complete waste of time and just made things worse).

Once you have your diagnosis or get referred to someone who specialises (you could research this online and ask the GP to refer you through Choose and Book) you could get help with it, treatment, if you need financial help you could qualify for things like ESA or PIP, you could get somewhere like the CAB to help fill in the forms for you. (apologies if you have done this already). If you need support with mental health and stress caused by all of this you could ask the GP to get referred eg for counselling or maybe some antidepressants would help (for me fluoxetine has been helpful). It might help to go to the GP with a short list of what support you would like to see if they can help, i find this works better than saying about past problems. For example I just got back from my follow up with the registrar at the first hospital where I first had my surgery, I took with me a short later stating my condition, medications and that eg " If has another obstruction please give strong pain relief eg IV Morphine" (rather than, "In past been left in agony with no pain relief" "If requires surgery would not like an epidural, rather a PCA" this went down well, and it has been put in my file in case needed.

Best of luck, you sound like you need some, it is not easy having a challenging medical condition especially when it has been a long time being diagnosed and you have been left in pain and fobbed off. it helped me to try and forgive- sometimes it may not be intentional but the doctors just may have no experience of your condition or how you are feeling... they are just trying to see how to help you with the knowledge they have at the time. Some can be dismissive and rude, and I have been told I'm not in pain when I have been...it can make you feel like you are going mad... but try and fight just think it will help your children if you et properly diagnosed then they can get proper support too.

Sorry just read again and saw you had taken your children to the up to date doctor who does the research, well that's fantastic good for you!

And yes the other doctors may now know as much about it but at least they are trying- I found i know more about the adhesions than my GP but that's because they are generalists... try and keep in touch with the specialist directly you can do this yourself it doesn't have to be through the GP.. although maybe in your case you could get them to write to your GP and explain the condition and treatment options?

Also you may find once you have your diagnosis and are referred to the specialist things may get easier as they can sort out the treatment and it won't be such a battle?

No the Dr I took my child to recently, was not up to date and didn't know as much as other HCP's we have seen and advised to do things the specialist HCP's advised not to do. I believe their advise was on the notes, so they were not read then.

There is no treatment for most of what is going on with me, there is no cure. There is some treatment for some of it though.