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Advance Directives as mass protest?

Whatif1234Whatif1234 Member Posts: 5 Listener
It is quite well known amongst disabled people that our care plans are often inadequate and that gatekeeping through real or feigned lack of understanding of our issues prevents us getting help (that costs the gov money).

I have decided to give up on trying to get help and instead say that in the absence of such help my life is not worth living, so in the event of a life threatening situation I would not wish to recieve care.

I would like this to be in my medical notes and shared with everyone who treats me.

I'm in Scotland so Advance Directives are not legal, and I havent been able to get advice with this other than from my GP.

Obviously Im bumping into the "must be depressed" issue.

Initially I was doing this for myself, but after talking to my GP I'm really wondering whether it would be effective as a sort of mass protest LOL  

Replies

  • [Deleted User][Deleted User] Posts: 118 Listener
    whatif1234
    these thoughts are what i have had too! Im a fighter I always have been ( i had to be from being very small to survive..this was the legacy of my CPTSD a very frightening and neglectful childhood) I find with my health conditions and the fight to survive this neglectful soul distroying system has me thinking the same. My fight is being dimiished I do suffer depression as it comes with the Ptsd as it is a difficult condition in itself added to chronic fatigue and chronic pain and fighting the PIP and ESA war as well as fighting for understanding and help from a joke of a mental health system . it has got me so I am the same. It seems like a win win for me and the society we live in since the government are hell bent on ridding the UK of disability support for people who are legitable claimants. I saw the  ex army Ptsd sufferer on the tv doing a hunger strike and know a ex army ptsd sufferer who also lost a arm not getting the mental health support he needs too and the distruction it has on his life and it makes me feel so angry and sad . The government could do better than this and focus on those more able to withstand this treatment ...the tax dodgers..the companies and individuals who are growing fatter and fatter in our society today!
  • Whatif1234Whatif1234 Member Posts: 5 Listener
    I had considered a hunger strike too, but just figured they would ignore it without press coverage.

    I suppose the downside of the Advance Directive is that it makes it really easy for them to get rid of us.

    Still I think there is some discomfort and embarrassment in them having to face it head on- though mainly I think this is more likely to lead to a denial that they are  not providing adequate care and an insistence that instead I am "over reacting" and therefore a failure to comply with my wishes.
    I dont suppose I should be surprised that a system that failed to acknowledge needs is still failing to acknowledge needs...

    This may have more luck in England whre Advance Directives have a more solid foundation in law.

    It is of course rubbing shoulders with many of the same issues as suicide and assisted suicide. The main ones that are shared being who has the right to decide if a life is worth living the individual or the state.

    In my case they are in a more difficult position as they have discharged me saying nothing more can be done, but in same letter have admitted there are unfulfilled care needs.
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    On one of my recent stays in hospital, the consultants were actively trying to convince patients to sign a DNR declaration

    Be all you can be, make  every day count. Namaste
  • Whatif1234Whatif1234 Member Posts: 5 Listener
    On one of my recent stays in hospital, the consultants were actively trying to convince patients to sign a DNR declaration

    WOW....How did people respond to that!? 

  • Richard_ScopeRichard_Scope Posts: 2,837

    Scope community team

    I know that a lot of care plans are not fit for purpose but there are many other ways that we as disabled people can affect change, other than signing DnR directives en masse. 
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • Whatif1234Whatif1234 Member Posts: 5 Listener
    An Advanced Directive and a DNR are not the same thing.
  • [Deleted User][Deleted User] Posts: 118 Listener
    I would sign a DNR no problem and if I could . I would also be happier to go to  Dignitas than to be living with my conditions and constantly going to have this fight with DWP long term alongside pressures to keep a roof over my head and food in the table. Seriously it is pushing me to the edge of indurance. It certainly is not going to put me in health and able to work as ive not been given a chance/space to see if I can beat my physical and mental health problems  and go back to my self employed career that i was loving.
  • Whatif1234Whatif1234 Member Posts: 5 Listener
    I've thought about Dignitas too, but based on how my clueless GP reacted to the ideas in my Advance Directive I do not think he would be backing that. It is also a great deal of money of course financing it would be very difficult.

    My condition is quite unique and it requires some thought/empathy/imagination to fully see the implications of my situation....I'm finding this lacking in nearly all care professionals. I'm continually staggered by how they cannot understand how difficult things are, but even my friends tell me that stuff that seems very obvious to me is not obvious to others until they fully engage with the issue. It is very frustrating. My friends are going to try to explain to my GP the things that they didnt initially realise and then realised they were not seeing it because they werent considering everything involved.... Im hoping that helps.
  • Richard_ScopeRichard_Scope Posts: 2,837

    Scope community team

    edited December 2018
    Hi @Whatif1234

    From what I've read there seems to be a lack of understanding from your GP? I would like to try and help with that. I have found some information about patient advocacy in Scotland that might help, here: Careinfo Scotland or The Scottish Independent Advocacy Alliance
    Hopefully, either one of these organisations can help you get the service you are entitled to and deserve from your GP. If not please let me know and I will investigate further.

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
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