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So much has changed

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    So much has changed

    So much has changed since I last posted. After my sister’s funeral in October, I had another review at Papworth and they decided to start with night time NIV which was a bit of a shock. My mobility and use of my fingers has reduced drastically and because of my loss of appetite and weight loss, I have been referred for a PEG which will be fitted in early January. The saddest bit for me was finally having to agree to a profile bed and giving up sleeping with my husband after 41 years. It’s all been pretty overwhelming and hard to deal with for both me and my family.

    In November, I was assessed for CHC funding and was really surprised to have been awarded a full care package; but that has come with some real issues relating to the carers. They decided without much discussion that I would have a live in carer and within days of being awarded she arrived without an opportunity to meet her before she moved in. We found out very quickly that she couldn’t use the Mo-lift which I use to transfer and I nearly got dropped 3 times on th first day she was here and would have been on the floor had it not been for my husband. Although we got in touch with the care agency and they came out to shadow her for two days she still cannot use the Mo-lift n a way hat I feel safe. We have been in touch with CHC and they are going to a review of the package because this is only one of a number of issues I have had with her. I had hoped having carers would make life easier but it really hasn’t so far.

    I can’t help feeling quite anxious about the future and am finding it hard to stay positive. It’s taken a lot to post this and because I can’t type my husband has had to do it for me. I am hoping that I might be able to get eye gaze soon so I can regain some independence. Sorry for the long post but just wanted to let people know I am still around even though so much has changed. Much love to everybody, Karen.

    Karen62 Oh Karen I really feel for you. Your post expressed so well how things are and the difficulties you are facing. It must be such a shock to everyday life having a life in carer there with you. Do you think you would manage instead if they could arrange a carer to come in several times a day or is it also down to lack of actual carers being available?

    I am sorry I dont have any advice but wanted to let you know we are thinking of you and hope you can reach a better solution. take care xx
    Diagnosed June 2022. Confirmed MND. Limb onset. Symptoms started November 2020.


      Hi Karen, it’s great to see you back here and good to hear from you.

      Sorry that things haven’t been working out with regards to your CHC. I can only give you my experience from here in Derbyshire…. I have two NHS people helping me with my personal healthcare budget. I have a Healthcare budget case manager who manages the financial side and also a nurse practitioner who specifies what the requirement is (and goes away to get more funding if needed).

      In my case we use Personal Assistants that I employ myself but I have used agency in the past and will also be using agency temporarily in the New Year to cover a vacancy we cannot fill at the moment. When looking for a suitable care company it will be posted onto the NHS brokerage where agencies can then bid for your package. In my case I was then free to choose which agency (if any) I have then gone on to employ. NHS rates are lower than Council rates so you don’t get necessarily the same agencies applying through the brokerage that you may see elsewhere. When choosing an agency, they should be making an appointment with you in advance to meet you, assess your needs, take a look at the setting and agree with you what is going to happen and how are you are going to work together. You should also be getting the opportunity to say to them what you require from your care package and your new carer(s). The only exceptions to this could possibly be where the NHS deem a situation as an emergency and may dictate what care is required in the first instance in the interest of safeguarding.

      From my experience you certainly should not be being ‘told’ that you need a live in carer without that being something agreed with you in the first place. Just because the NHS are footing the bill it does not mean that you lose your independence and freedom of choice with regards to your care. Equally, if your carer is not suitable (or not trained properly) then you should be going back to the care agency and asking for a replacement.

      My suggestion would be to go back to the people looking after your personal healthcare budget and insist that you are involved in the requirement and selection process.

      Take care, James x
      Foxes Never Quit 💙


        JamesW really well written x
        Diagnosed June 2022. Confirmed MND. Limb onset. Symptoms started November 2020.


          Karen62 how terrible for you to be told you have to have a live in carer and then for that carer not able to provide the right care for you. I hope you get it sorted very soon. Thinking of you.xx
          i agree with Zante that JamesW gave a very good account of CHC intervention.


            Karen62 ALS progression is relentless, as you're discovering - barely time to get your head around one thing, when you're hit with another grenade...

            I am shocked that you were not introduced to any potential carer, let alone a live-in carer - a stranger who moved into your house. There is a dire shortage of carers in the community but live-in carers tend to be easier to come by, perhaps that's why they went straight to the live-in option.

            I am appalled and surprised that the carer herself is content to use the MoLift, or any piece of equipment, without being able to use it safely. That she used the MoLift on day 1, even though she didn't know how to thereby putting your safety, says a lot about the carer and her employers - it was you who contacted her agency, not her, and that agency doesn't sound the best.

            See what the review outcome is and bear in mind the direct employment option.

            I hope NIV is working out well for you. xx

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


              Karen62 sorry to hear the issues you have been having. I can't comment on CHC as was turned down and not in a hurry to reapply!

              But the NIV and profile bed I totally relate to. Having just had both of those enter my life in the last few weeks. It really does feel like a big change and I too was sad to leave a bed with my husband.

              However, we have managed to put a single bed next to my profile bed. Got matching new duvets and the bed has helped me enormously as I had started to get pressure sores. So I hope you find your beneficial.

              Sorry I have no advice, just wanted to day I think I can understand some of what you are feeling and send gentle hugs xx
              Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

              Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!


                Karen62 its lovely to see you back but not your situation.

                I also was surprised to get chc. I'm mortified like others that you had no say in your care. It must be a bit awkward her living with you when you can't trust her.

                Niv was frightening for me also. I think we all feel a bit doomed when they introduce it. Its so out of our control.

                I'm also sympathetic to your move to separate beds. Again we all know its for our good but its taken another bit of us.

                re anxiety, are you on any medication for it? I am on lorazepam and I only take when I am anxious and it really does calm me down.

                I sound negative but I wanted to say you're not alone in your fears. X
                Diagnosed May 2021 bulbar onset als.


                  Karen62 sorry to see the difficulties you are having. I have no experience of CHC funding or care provision however its clearly important that the person caring for you is sufficiently trained and that you have confidence in them. I hope this can be resolved and either the confidence regained or a different provision put in place for you.

                  I hope the PEG procedure goes well in January, I'm sure it will be a big help and take the pressure off trying to eat. Good luck getting eye gaze or something similiar sorted out as well. Hopefully these things will help, take care x