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    Gold Standards Framework

    I have just received the transcript from my first clinic appointment with the MND MDT team in my area. I was taken aback to read a request to add me to the GSF register, this wasn’t discussed with me during the consultation. As a retired District nurse I have previous experience of looking after patients on this register, and I don’t feel it’s necessary for me yet. My diagnosis is PMA type of MND, so I was rather hoping my progression would continue to be slow. Just wondering if all people with an MND diagnosis get added to the GSF register as a matter of course?

    #2
    I'm not aware of being put on the GSF myself, SueM and I think I'm on a faster trajectory than you. Although my mother who has stage 4 cancer is on it. My sister says she's trying to race me to the grave.
    Each day is made easier with a bit of humour.

    Comment


      #3
      Hi Sue,
      I don’t think you need to worry, your local hospice will be involved with the MDT, I would hope it’s just putting you on their radar, which to be honest is to your benefit they do not just look after palliative care, they have more resources to help you through this, a lot of health authorities don’t have the resources and rely on the hospice, not everyone has access to MND centre of excellence or specialist nurses, I know in my own area, my general care will be provided by the hospice as i progress, I don’t need them yet but I know they know about me. Better to be on their list now rather than battling to get help when needed.
      shaun
      As long as there’s golf and beer I’m happy

      Comment


        #4
        It must have been a shock indeed, Sue, particularly, as a former District Nurse, you are fully aware of what goes on in those meetings!

        I was similarly shocked to find a Palliative Care Nurse arrive at my house no long after my diagnosis - to me, that was a clear signal that my death was iminent 😦 And where I live, that also meant I was up for regular discussion in my GP's surgery! (I am pretty sure they are fed up to their back teeth discussing me by now 😀)

        With hindsight, it's great that it happened and provides for continuity of care and sharing of knowledge, should healthcare professionals move on. And I agree with Shaun's thoughts too.

        The inclusion criteria tends to be "life limiting conditions", rather than knocking at Death's Door!!

        Take care.

        Love Ellie.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          #5
          Thank you everyone for your responses, it’s good to get your views and advice. I think the big thing for me was that this has been done without discussion and therefore without my consent. I have a phone appointment next week with my GP to discuss this with him.

          Comment


            #6
            I know nothing about an MDT list. First question is what do the letters stand for? Lynne
            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

            I'm staying positive and taking each day as it comes.

            Comment


              #7
              Originally posted by Lynne K View Post
              I know nothing about an MDT list. First question is what do the letters stand for? Lynne
              Hello Lynne
              Multi Disciplinary Team it comprises of key members of your care team, consultant, hospice, OT etc, they meet up on a regular basis and have a good old gossip about you.
              it’s there to make sure that your care needs are met.
              You probably signed a form when you were diagnosed.
              S

              As long as there’s golf and beer I’m happy

              Comment


                #8
                MDT = MultiDisciplinary Team.
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                Comment


                  #9
                  When I go for my neuronal appointment there's usually around five people squashed into an office with me. They say the NHS is overworked. 😂x
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                  Comment


                    #10
                    Hi Sue,

                    Firstly, sincere apologies for the delay in responding to your forum post.

                    As mentioned by Shaun and Ellie, the Gold Standards Framework (GSF) is a model that enables good practice to be available to all people with life-limiting conditions, so as to help them plan ahead and improve co-ordination of care (https://www.goldstandardsframework.org.uk/) The addition of people with a diagnosis of MND to the GSF register would usually depend on whether the GSF has been adopted by their primary care team. We would suggest that you check with your MND MDT team whether it is a common practice to include everyone with a diagnosis of MND under their care to the GSF register. And yes, it would be good to discuss this with your GP as well.

                    I do hope this is helpful.

                    Please do not hesitate to contact us if we can be of any further help.

                    Kind regards,
                    Prachi
                    MND Connect Adviser
                    MND Connect
                    Contact us on 0808 802 6262 or at [email protected]

                    Comment


                      #11
                      Thanks Saun and Ellie, Lynne
                      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                      I'm staying positive and taking each day as it comes.

                      Comment

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