Dealing with chronic pain
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Legal help

harry01harry01 Member Posts: 168 Courageous
Hi,

I am still having a bad experience with getting skin condition treated but I felt it necessary to complain given my treatment and the timeframe I have had this problem. 

I complained to the hospital but then all they do is say 'In this doctors opinion, he thinks X' and 'Sorry you had cause to complain.' None of it address the fact that a diagnosis was made that is in fact wrong. Probably wrong and still this hygienic skin problem hasn't been solved. 

I need help being heard. I have a care coordinator and I used Power, but they have done nothing to change anything and haven't taken on board my concerns. 

Has anyone got any advice? Currently had this problem 6 years, but I think the biggest thing has to be the response or lack of response from primary care, the hugely long wait to see dermatologist and finally the response from the dermatologist. 


Replies

  • euroeuro Member Posts: 40 Courageous
    Hi @harry01

    Have you asked for a second opinion or made an official complaint?  

    I copied the section below from an the 'Age UK Factsheet 44 - NHS Services'.  An advocat will be able to help you make yourself heard and get your concerns taken seriously. 

    "Every area of England has a free NHS independent complaints advocacy service commissioned by the local authority. Contact them if you are thinking of making, or want to make, a complaint about NHS care or services. Your local Healthwatch has details of the local advocacy service and may be interested to hear about your problem, although a local Healthwatch cannot investigate NHS complaints.
    Advocacy staff do not suggest a course of action but:
    ⚫ help you think through exactly what you want to complain about and what you want to achieve by making the complaint
    ⚫ help you write letters and prepare for meetings
    ⚫ arrange for an advocate to support you at meetings if you want one."


  • harry01harry01 Member Posts: 168 Courageous
    Thanks. Of course I made a complaint to the hospital through PALS with an advocate from 'POHWER'. But they quoted me out of context and didn't even attempt to clarify or represent what my complaint was. 


  • harry01harry01 Member Posts: 168 Courageous
    When I complained they booked me appointment with hospital for dermatology. But it was only when I complained and told them how much distress they caused...
  • euroeuro Member Posts: 40 Courageous
    Can I clarify that I understand correctly; 

    you now have an appointment to have your skin condition looked at again?
    and 
    your grievance is with Power for not representing you particularly well?
  • harry01harry01 Member Posts: 168 Courageous
    Yes. But obviously not happy with the response to the complaint. 


  • harry01harry01 Member Posts: 168 Courageous
    I'm really tired of this. I have really dug my heels in to be listened to. I have really tried but so many in the healthcare system seem actively opposed to helping me as if it was against their religion. 
  • harry01harry01 Member Posts: 168 Courageous
    I have struggled to sleep and do the most basic of things. I have depended on computer games or electronic devices to purely distract myself from symptoms. 

    It's not good for me. They have not seriously considered the damage this does every single day to my mental health. 

    This should be dealt with in primary care. I wake up every morning dehydrated. What is causing that? An allergic reaction? I cannot pin point what this is. I'd like the last 6 years of my life back. 

    These people are hopelessly oblivious and would defend their actions till the end of time whether right or wrong simply on the basis that they were following some protocol. I cannot deal with this any more.
  • harry01harry01 Member Posts: 168 Courageous
    I ring them, send emails, formally complain. I make a point of doing this. I am not even in a position to do it. They're taking advantage of me. 
  • Tori_ScopeTori_Scope Posts: 5,038

    Scope community team

    Hi @harry01. I'm sorry to hear that this problem is still ongoing. 

    Have you read through the Citizens Advice page on NHS and Social Care complaints? It has quite a lot of useful information about how to make complaints, and what further steps you can take.

    If you don't feel as though PohWER were able to offer you the level of support you wanted, Citizens Advice also list some other organisations that can help with legal matters.

    I believe that your care coordinator is more centred around ensuring you access the mental health support you need, is that right? Have you spoken to them about how you're still feeling quite anxious and low over this issue? 

    Have you spoken to your GP about your dehydration? There are different reasons why you might feel dehydrated even if you're drinking enough water. It's important that you speak to them so that they can help you work out why this might be the case.  
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  • harry01harry01 Member Posts: 168 Courageous
    I tell the GP everything. They're not interested. It's not a problem at 'clinical' levels. They don't care about this 6 year long yellow skin problem and they don't care about me. All they care about us seeming to follow whatever guidelines they're given whether it's helpful or not. 

    I mean it's the only reason I have had this pain disorder for 32 years and went mad. I always had the potential to recover... I just wanted to enjoy living. 
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