PIP, DLA and AA
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Plannung a Journey

1984cathy1984cathy Member Posts: 26 Connected
edited June 26 in PIP, DLA and AA
I need help in the definition of planning a Journey for my PIP form.I am diabetic and take 2 different kind of insulin.one is called Toujeo and the other Novirapid Insulin,I can plan a journey with the use of a mobile phone.My difficulty comes with my diabetes being very erratic..I have sells of being dizzy and feeling faint which i know is due to my diabetesit is like having a hypo low sugar levels/high sugar level.I have had a number of colapses out side and have been attended to by the ambulance service and people on the street who have assisted me with sweets and chocolate to get things back to normal.How on earth can I plan a journey knowing of the possibility of having a hypo,Has anyone in this forum had instances like this and how have they replied to the answer on the PIP application I am at my wits end I live on my own

Replies

  • MarkN88MarkN88 Member Posts: 1,314 Pioneering
    Just a question out of curiosity but do you test your sugars? You should really be aware when you are low and high. 
  • janer1967janer1967 Member Posts: 11,205 Disability Gamechanger
    Hi there and welcome 

    I am insulin dependant too and I'm not quite sure diabetes would fit with this descriptor 

    You should check sugar levels before leaving on a journey as all drivers must also do 

    It may affect the journey but not the planning 

    Others may have different opinions of course 
  • janer1967janer1967 Member Posts: 11,205 Disability Gamechanger
    You may benefit from one of the blood monitoring devices now available 
    @MarkN88 knows what they are called 
  • woodbinewoodbine Community Co-Production Group Posts: 4,535 Disability Gamechanger
    i have to say that I also doubt that diabetes would fit this descriptor for the reasons noted above, but if you can give several examples of when you attempted to carry out the descriptor and what happened then it's worth a go.
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • 1984cathy1984cathy Member Posts: 26 Connected
    if i should catch a train or bus  iget the feeling that my sugar levels are high or low .I monitor my blood sugar levels 4 times a day with the readings being in double figures.My insulin is given before each meal.I always have this feeling that I am going to pass out which i have done on a number of times, is uncontrolable.So if this is the wrong decipher for planning a journey then what topic on the PIP should it be against
  • janer1967janer1967 Member Posts: 11,205 Disability Gamechanger
    I'm not trying to be harsh but mist diabetics manage to control their sugar levels and if not you need to speak to your diabetic nurse or consultant 

    As for the descriptors I would suggest you cover it in medication and eating descriptors you can also add it in the additional info section 

    If you feel like this a lot it would fit in most tasks 

    Also in the walking mobility section 

    Also it may be worth getting some help filling in the form from welfare rights or Cab 
  • MarkN88MarkN88 Member Posts: 1,314 Pioneering
    janer1967 said:
    You may benefit from one of the blood monitoring devices now available 
    @MarkN88 knows what they are called 
    The one I use is freestyle Libre. 

    1984cathy said:
    if i should catch a train or bus  iget the feeling that my sugar levels are high or low .I monitor my blood sugar levels 4 times a day with the readings being in double figures.My insulin is given before each meal.I always have this feeling that I am going to pass out which i have done on a number of times, is uncontrolable.So if this is the wrong decipher for planning a journey then what topic on the PIP should it be against
    What times do you check them? Before each meal? Are you type 1? 
  • chiariedschiarieds Community Co-Production Group Posts: 9,231 Disability Gamechanger
    edited June 25
    Hi @1984cathy - my understanding of the 'planning a journey' descriptor is that it is more geared towards people with mental health problems or learning difficulties for example. You say you can in fact plan a journey, therefore I can't see where any points would be awarded. I would however say the next descriptor on 'moving about,' which is about physical problems, would be of more relevance as you can't perhaps do this 'reliably;' a very important concept with PIP. You should give a couple of detailed examples for a couple of recent problems you've had with the collapses you've had.
    If you don't feel it fits with that descriptor, then I would suggest you could add it with the additional info at the end.
    If you haven't seen them, a good read through about the descriptors may help, reading the notes at the end which are about 'reliability' altho the word isn't mentioned. Namely can you do an activity safely, to an acceptable standard, repeatedly & in a reasonable period of time? Please see: https://www.cambridgeshire.gov.uk/asset-library/Personal-Independence-Payment-Descriptors-and-Scores-April-2021.pdf

  • mikehughescqmikehughescq Member Posts: 6,646 Disability Gamechanger
    edited June 25
    https://pipinfo.net/activities/planning-and-following-journeys

    Planning is given its ordinary everyday plain English meaning. You have said you can plan using a phone so that’s the end of that discussion. Diabetes is irrelevant to the ability to plan a route unless something like diabetic retinopathy is actively impacting the ability to do that in a reasonable time or to a reasonable standard. Following a route  could score under 1d or 1f if you needed another person with you most of the time e.g. because you get no warning and are unable to feed yourself or emergency meds. 
  • Tori_ScopeTori_Scope Posts: 5,039

    Scope community team

    Hi @1984cathy :) I also just wanted to check-in with you about your diabetes management, as it doesn't sound like it's hugely under control at the moment. Is that fair to say? Do you have regular contact with medical professionals regarding your diabetes?
    Online Community Coordinator, she/her

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  • 1984cathy1984cathy Member Posts: 26 Connected
    yes i have regular contact with my consultant who i saw last week .I tell them about my high reading which are in double fifures but she does not listen,All the consultant says is let increase my insulin from 10 to 14 units 4 times a day.i was asked how many times i urinated in a 24 hour period,my answer was at least 20 times,I have requested a review of my PIP as i have numerous condition  which affect some of my abilites.The DWP think that when you get older conditions improve  who are they kidding.I have always complted the PIP form myself but i am going to get the CAB to fill it in for me,unless you use the technical word the DWP require then i believe I can icrease my award,I currently had a total of 0 points for Daily living.I cannot imprrove on my mobility  wwhich is 10 due to being over 65

  • MarkN88MarkN88 Member Posts: 1,314 Pioneering
    1984cathy said:
    yes i have regular contact with my consultant who i saw last week .I tell them about my high reading which are in double fifures but she does not listen,All the consultant says is let increase my insulin from 10 to 14 units 4 times a day.i was asked how many times i urinated in a 24 hour period,my answer was at least 20 times,I have requested a review of my PIP as i have numerous condition  which affect some of my abilites.The DWP think that when you get older conditions improve  who are they kidding.I have always complted the PIP form myself but i am going to get the CAB to fill it in for me,unless you use the technical word the DWP require then i believe I can icrease my award,I currently had a total of 0 points for Daily living.I cannot imprrove on my mobility  wwhich is 10 due to being over 65

    Which insulin are you taking four times a day? 
  • 1984cathy1984cathy Member Posts: 26 Connected
    I take Novarapid  at 14 units  4 times a day  before meals   and I take Tougeo  40 units first thing in a morning once a day
  • MarkN88MarkN88 Member Posts: 1,314 Pioneering
    1984cathy said:
    I take Novarapid  at 14 units  4 times a day  before meals   and I take Tougeo  40 units first thing in a morning once a day
    Novorapid is a quick acting insulin and should be altered dependant on the carbs quantity of each meal. 

    Therefore there should not be a set amount of insulin for each meal, it should vary. 

    That explains why you are constantly floating between low and high. 

    Your consultant doesn’t seem to know what s/he are talking about. 

    Have you the support of a diabetes specialist nurse? 

    You should be taught to carb count and how to adjust insulin accordingly. 

    This will help you gain better control. 

    The tougeo is a long acting insulin which is why you only inject that once  daily and will run in the background. 
  • janer1967janer1967 Member Posts: 11,205 Disability Gamechanger
    Totally agree @MarkN88 however in this person's defence I have also been advised in the past by specialist and diabetic nurse to inject a set amount of nova rapid 

    I have taught myself how to adjust the amount by testing and what I eat

    That is why I think they would benefit from a monitor
  • MarkN88MarkN88 Member Posts: 1,314 Pioneering
    @janer1967

    Novorapid should never be set as a specific amount because we all eat different things from meal to meal and everyone reacts differently. 

    I do understand though that specialists often still advise set amounts but they are out dated. 

    Literally years and years ago a lot more diabetics were on what was called mixed insulin’s, so it had a % of quick acting and long acting insulin  together and they were always prescribed as set amounts. 

    However that method allowed for no flexibility. 

    These days diabetics should be on MDI - multiple daily injections - using separate quick and long acting insulin to allow for more flexibility and to gain better control. 

    You should have access to. DSN, consultant and a practice nurse for advice and support. 

    If you need further support you are entitled to a referral to a dietician too. 

    Alongside this you should be asking for access to a diabetes educational course that hospitals run. 

    I also advise testing before every meal and 2 hours after to see how the novorapid is working. 
  • chiariedschiarieds Community Co-Production Group Posts: 9,231 Disability Gamechanger
    Whilst not disagreeing with @MarkN88 & @janer1967 & you will both know more about diabetes than I, do you both have type 2 diabetes? Perhaps the OP has type 1 (the urinating so much suggests this). However you will know whether this makes a difference in the management of diabetes, so I hope your input will continue to be of help. Hope you don't mind me mentioning this as I can see you're both trying to advise.
  • 1984cathy1984cathy Member Posts: 26 Connected
    my consultant states iam type 2 diabetic and not type 1.What i cannot understand is why the consultant says this when i take insulin 2 types I  also take metformin asprine rampril.I dont think this consultant really know whats what
  • janer1967janer1967 Member Posts: 11,205 Disability Gamechanger
    @chiarieds I am type 2 like the op and mark is type 1 

    Once you become insulin dependant the control isn't a lot different 

    Totally agree with all Mark has said 

    @1984cathy I take exactly the same insulin as you and metformine I strongly suggest you follow some of marks advice you need better educating how to control it and don't leave it too late 

    It can cause a whole host of other complications which I have experienced like sight issues and infections

    Not meaning to scare you but I have had diabetes for over 30 years and long term effects is reason for my disabilities 
  • chiariedschiarieds Community Co-Production Group Posts: 9,231 Disability Gamechanger
    edited June 26
    Thank you @janer - then you will both know the impact of either type, it was just niggling at the back of my mind, so please forgive me, & appreciate both yours & Mark's helpful comments, & your explanation. As you both say, the OP needs to get their diabetes under control.
  • MarkN88MarkN88 Member Posts: 1,314 Pioneering
    chiarieds said:
    Thank you @janer - then you will both know the impact of either type, it was just niggling at the back of my mind, so please forgive me, & appreciate both yours & Mark's helpful comments, & your explanation. As you both say, the OP needs to get their diabetes under control.
    Yes I’m Type 1 - diagnosed at aged 12 and I’ll be 33 this year so I’m experienced. 

    Although I should point out I’m deffo not trying to give medical advice. Just going by experience. 

    A lot of diabetics over on some diabetes forums I’m on all day that you become an expert on the condition and end up knowing more then specialists. I’ve had DSNs that know less than me! 

    1984cathy said:
    my consultant states iam type 2 diabetic and not type 1.What i cannot understand is why the consultant says this when i take insulin 2 types I  also take metformin asprine rampril.I dont think this consultant really know whats what
    You can be type 2 and require insulin so that could be true. 

    Have you had any specialist testing to confirm type?

    I do recommend a referral to the DSN team if you don’t see them. 
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