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MarblesMarbles Member Posts: 2 Listener
l became ill 3 years ago. Changed my life. I had issues with osteoarthritis my knee ankles and neck, which l knew off. I had septis which was missed, this lead to 3 years of hell with the NHS missed diagnosed and passed from surgeon to surgeon. Fisula, whole in my bladder, lump biopsies all not followed up. I eventually got some help from a different trust as l kept getting diagnosed. I was very sick. I was dismissed from the NHS to the utter disgusted of my GP only to get septis again. My story is to long and horrific to face some times. I recently had enough.. it's taken an emotional toll on me. My asthma is chronic and I'm on a copd spray. After 38/42 lots of antibiotics my body reacts to anything l take. 

l complained to pals! They're just as appalling, lying and covering up the failings of the trust. I contacted councellor in Jan. Spoke to a man a few mths later, just BS after BS my trust recently was highlighted for failing basic guidelines. I had to complain again as still they hadnt even treated me. 

It then took me to pay where l met the proff (*name removed by moderator) High up two hour meeting. He had read my notes and admitted things were bad and l was advised they were going to sort them. By that time I'm using a crutch, chronic pain and my spine was highlighted for deterioration. ln the scans l had.. my right had has arthritis in it. It doesnt work sometimes its 50% weaker my thumb doesnt work l have nodules in both hands but my right is worse. I've also had trembling. 

My doctor says there is nothing they can do.. My thumb doesnt work some times and my joint is swollen. My shoulder and elbow is the same. Now l cant walk to far without chronic back pain. With everything going on it's been on a list. Proff (*name removed by moderator)  and pals promised a call of action a holistic approaches to my complexes case. 

Four mths later they have done nothing. They havent even spoken to my GP as stated. I went to see a chiropractor and paid for xrays. My spine and neck dont look very good. I knew about my neck in my 30's. My lumber spine seems to be fused together and is buckled. The chiropractor said my spine is shocking for a womdn my age. 

My doctor said lve got advanced osteoarthritis. It seems ecoil could be colonizing my bladder causing infection and making me feel so unwell. I arranged with my own doctor to do this. As l now mistrust my trust so much and the NHS. I tried to get referred before they just cancelled the appt and disnt tell anyone. 

My mental health has taken a toll l seeked out councilloring shes very nice but l find it makes me feel worse. Her constant referral to me getting back to work!! I'm like yeah l do wish ld like to get my health sorted first. She can see l struggle with walking and pain..weird. I feel abandoned l have no family and no support. I've worked self employed and as a contractor, busy life loved business and the unexpected to this isolation and not having a voice. Constantly let down by the system and l feel frozen in time. Like I'm screaming but no one can hear me. 

Yesterday l just crashed l had many days staying in bed not wanting to go out see anyone. Not sleeping, eating feeling out of place. Helpless. I have no support my doctors surgery has now gone pear shaped my good doctor hardly takes surgeries and they only have one doctor. 

The receptionists l feel sorry for they are under pressure and are at breaking point.  l moved trusts over my bladder after l was patronised called a liar and abused by a consultant all because l didnt want to take any more antibiotics. My asthma is out of control. Has been since I've been I'll with chest infections bronchitis asthma attacks where I've been 999'd and constant breathing issues, wheezing.  I now had bad ezcema and react to any tablet. 

This consultant gadnt read my file, intact l had only actually seen 3 ppl who had. And I'd seen alot. A few ppl where fired in my trust! That's how bad it was and still is. I refused to continue with this consultant. Never apologised for his abusive manner just lied and subjected me to humiliation by implying l was lying.. I didnt have an operation in staffs an laparoscopy even tho I've got scars and they never contacted him even tho l submitted his details. They then lied. Told me they couldnt access my pictures on their data base. He then reluctantly said he would refer me for a treatment. He wrote to me saying he had and didnt. 

l cant explain in words the cruelty and stress this all has caused me. I'm in pain all the time lm emotional, angry and hitting out. I'm disgusted that ppl would treat ppl in an inhuman way! I rang pals to see what happened with my meeting with her and meaking and to ask why after 10 weeks I'd heard nothing. To be told she had to sort out an urgent manner, (*name removed by moderator)  had spoke to some nameless doctor and they hadnt called my doctor. I knew this because ld spoken and asked her.. She said did you expect they would? I said l hoped they would try and make amends and help me. 

l feel so ashamed l actually trusted them again poured my heart out.. l rang (*name removed by moderator)  secretary 3 weeks ago after l got the results from my xrays. I've heard nothing since that was 4.5 mths ago. So much for the priority of care 😉 km being assessed for my back on friday by my local trust you can imagine my alarm. lm in agony lve been paying a chiropractor so l can be abit Mobil. 

l just dont know what to do any more.  I've been fighting the benefit nazis who kept finding me fit for work dispite me having septis not able to stand for longer than 20 mins. Cancer lists my bloods a mess hole in my bladder. Leakage. And my skeletal issues. Chronic fatigue.  Pain everywhere even my teeth have been effected.

 Yesterday l had a mini breakdown trying to get help. I've been fighting s chest infection, again I've had two lots of antibiotics. I've had dizzy spells And weakness of my joints. lve felt very unwell again.. chronic pain and upset stomach.. My asthma nurse has been supportive she pushed me in to see the doctor he gave me more antibiotics. They have taken my repeat antidepressants off my repeat script. He told me to make another appt he asked how l felt l said abit suicidal it's getting too much for me to handle he told me to make another appt. But you cant get an appt. I just think what is the point. 

I've had 3 years of being a lab rat told l have this n that then no it's this and that. And had NO treatment. Just antibiotics whilst my health has deteriorated further.. The NHS is appalling full of ppl milking the system not interested in patient care and covering up their mistakes. The problem doesnt lie in the narsacist they employ only but the systematic lack of accountability. Reading my medical notes you can see the systematical mistakes and missed opportunities like (*name removed by moderator)  did when he actually read my notes but did say he would take action bit clearly hasnt and had no intention and just left me. 

I'm glad l paid for the xrays as clearly that helped me to get reviewed but l have no Hope's with it being the same trust. 

Please could any one suggest any help, advice. I feel like I'm drowning in all these issues with my health yesterday l cried l havent done that for a while as l felt so numb. I'm not the same person l was. I struggle some times with facing the day and go and stay in bed. I've cancelled appt as l dont want to go out l feel safe at home.. Its a struggle.  I dont sleep well and no one cares. I could die and no one would know.. 

Replies

  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Hi @Marbles
    Welcome to the community and thank you for sharing, it sounds like you have been through so much in the past few years and you feel really let down. 

    It does sound like quite a complex case and it's not surprising that it is all getting to you.

    You mention feeling suicidal and I just wanted to let you know that you are a member of our community and we appreciate you. If you are having thoughts of suicide, it is important that you discuss them with someone who is qualified to help. I know you say there is no point in making a doctors appointment as you feel that you aren't listened to there and it is hard to get to see someone. Please call the Samaritans of their free telephone number 116 123 or email them at [email protected]

    You might also benefit from reading MIND's information on how you can help yourself.

    If you feel that you may be an immediate danger to yourself, please call 999 or go to your local hospital right away.



    Scope
    Senior online community officer
  • BirdsnbeesBirdsnbees Member Posts: 75 Pioneering
    Make a list of all your health issues and make seperate gp appointments for each
    Get an advocate
    Get Data Protection notes from everyone NHS doctors the trust you've been to
    Go to your MP/AM/Scottish minister
    Take time for yourself to relax get better
    Then attack your health when you can
    Get help with sorting your benefits is there a local law centre or someone who can act for you to sort it out
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,924

    Scope community team

    Hi @Marbles. How are you doing?
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
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