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  • MMG
    replied
    Hi

    I must say that our experience is different to a lot on here, maybe because my hubbies initial reaction to his diagnosis was that he wanted to end it all and jump on a plane to Dignitas. Anyway, our first contact with the hospice was very early on after diagnosis and Dean gained great comfort from knowing that when the time comes that he has had enough there are legal ways in this country to say enough is enough and go peacefully. So we started the end of life discussions very early on.

    We sorted out LPA's and ADRT to provide emotional comfort to him and the DS1500 was provided at that time.

    Anyhow, once they were sorted we could get on with living well, which incidentally is the name of the hospice service.

    They said that they are surprised that more people don't cover this off sooner rather than later.

    The DS1500 speeded up the blue badge and benefits which we had no clue about as have never claimed benefits. Got PIP at higher level and ESA.

    Our support services have (to date) been amazing and explained that provision of NIV machines are a NICE recommendation so they have sat here for months unused, but his SATS dropped last week so he is starting to use it. plus he is having a PEG fitted in a couple of weeks - he was referred some time ago before he needed it, but swallowing problems are starting to occur with liquids so actually quite timely.

    Because we were in the system early on, I know who to contact whenever a new symptom occurs. As soon as swallowing liquid was a problem I called the neuro rehab team who sent out the speech and language therapist who has provided thickeners so now that symptom is under control.

    Initially we were overwhelmed by everything and in total shock and were told what might happen and who to call if it did. It was scary at the time, but I do feel much better prepared now that the reality is happening.

    Don't get me wrong its difficult but those darkest days at the beginning dud kind of prepare us.

    The hospice has explained that we are fortunate that we live where we do as the service is well funded. So there is a bit of a postcode lottery too.

    So far though for us we are being supported.

    I unfortunately broke my leg and found that this really impacted on being able to physically care for Dean, a casual email to the OT meant all sorts of additional support and equipment being put in place to help within a few days. I just hope we remain feeling this well supported.

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  • Patw
    replied
    Ellie thanks xx

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  • Ellie
    replied
    Patw I've the Champagne on ice for you Patrick 🤞🤞🤞😘

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  • Patw
    replied
    DeeH yes my physio is on the case and thanks 🙏

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  • matthew55
    replied
    I'm only now realising how lucky I was with my GP. 👍😁😘😍xx

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  • DeeH
    replied
    Originally posted by Patw View Post
    Thanks and hopefully I get somewhere soon ,, my physio is trying too help me !! My partner informed me that the doctor she had asked for the form said that she’s never handed 1 out and that they only hand them out to cancer patients and people with neurological problems which my partner said well he has mnd , which she replied ok well I will speak with your neurologist!!! Baffles me that even drs are misunderstood with mnd !!!


    Patw

    Honestly some doctors don't know their arse from their elbows.

    Terminal only cancer and some neuro problems!!!!!

    They really need to use a medical dictionary.

    Good luck I found the physios and OTs very practical and very helpful.

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  • DeeH
    replied
    Patw

    Please connect the MND Benefits team

    I forgot to add that I did this and they run through your curcumstances and give you an idea of what you are due (potentially).

    I got adult advocate (a free service) to help my mum deal with social work etc (in Scotland)
    As they were not listening to me her daughter.

    Good luck

    the other reason for the DS1500 form is that the illness changes your abilities going forward,
    to having to keep reapplying for PIP changes is just time consuming and frankly cruel.

    Leave a comment:


  • Patw
    replied
    Thanks and hopefully I get somewhere soon ,, my physio is trying too help me !! My partner informed me that the doctor she had asked for the form said that she’s never handed 1 out and that they only hand them out to cancer patients and people with neurological problems which my partner said well he has mnd , which she replied ok well I will speak with your neurologist!!! Baffles me that even drs are misunderstood with mnd !!!

    Leave a comment:


  • MNDConnect
    replied
    Dear Patw,

    So sorry to hear you are having difficulty getting your GP to complete a DS1500. Given the recent publicity over the MND Associations campaign to scrap the 6 months rule for people diagnosed with Motor Neurone Disease, you could have hoped for a little more understanding.

    As Mary C suggested, if you have a palliative team or have been referred to a hospice, they can also issue a DS1500.

    You may want to call our benefits team on freephone 0808 8010620 they may be able to assist you with your application and with advice on getting a DS1500.

    Kind regards

    Jacqui Anderson
    Senior MND Connect Adviser





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  • Patw
    replied
    matthew55 Sorry

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  • Patw
    replied
    They have already said no @mathew55

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  • matthew55
    replied
    When you see a neurologist get them to issue it.

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  • Patw
    replied
    Thanks all I’m fuming 😡 but I will find away ,, never have I claimed anything but now I got this mnd at 41 with four young children no money coming in and a mortgage to pay so having to fight for help is getting me down

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  • DeeH
    replied
    Patw

    A long post (lots of experience with PIP, "terminal" diagnosis, plus idiot job worths)

    I am so sorry you are going through this. It is awful and I am fuming on your behalf.

    It is a postcode lottery, as my husband Thomas got it as standard in July 2020.

    The team where he was at the time was always going on about how terminal MND is, plus the OT and the physio.

    In fact every visit started with the "Your gonna die" chorus eventually I said enough, we are not in denial,
    just want to deal with what issues are in front of us at present. We are aware it is presently incurable and gets worse over time.

    About DS1500 form, having had to go through the general PIP form (60 pages and now 40, just give you less space for your answers, with my parents, it is a crap experince, dwelling on the negative)

    All the DS1500 forms just fast tracks you for maximum Mobilty and personal care for PIP.

    if you already have this you don't need the DS1500.

    Our MND nurse sent it to the DWP on our behalf and we got it in 2 weeks and Carer Allowance quickly followed.
    Only a phone call with 2 questions, one being that you are expected to die within 6 months (may now be 12).
    They are happy to talk to the carer as long as the person with MND can give permisson over the phone.
    Just say yes if you are in this position.

    We were reassured that it doesn't mean you are going to die with in the time frame. But a percentage of people do and who are they to say who.

    Also I got the feeling that in some areas they fill it out as standard (a don't ask, don't tell type of policy), that having MND is crap enough without having to jump through hoops of DWP.

    I had to get my mum (with Alzheimers) to a assessment centre for PIP assessment, person was horrified as we had supplied reams of evidence. And mum could bearly walk at the time. I found out later you can request a home visit, which I did for my dad (vascular dementia).

    So it looks like your team are one of the sticklers re how terminal is assessed.
    Terminal for some people are if it is incurable and will eventually lead to your demise.
    Terminal for DS1500 is if you are "expected" to die within a designated by the DWP, timeframe.

    My mum's dementia is terminal and technically she is could request hospice care. She was diagnosed in 2006.

    Thomas my husband, diagnosised with MND in July 2020, has been recieving Hospice at Home for 6 months, not because he is ill but so I can get time out the house to shop and get 4 hours out.

    My gran was diagnosed at terminal with throat cancer, gather the family round etc, from other countries she has less than 2 months to live.

    She died of her cancer 8 years later.

    All the best

    Hope you can get someone to sign it.

    Leave a comment:


  • EvelynMW
    replied
    I am pleased to say that I have had none of the above dfficulties - i am in the Cambridge area and under Addenbrookes. Before my MND diagnosis i wouldn't have had many words of praise to say about any of their other services!

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