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Where do I go for help?

Discussion in 'General Messageboard' started by AJLang, Oct 8, 2019.

  1. AJLang

    AJLang Well-Known Member

    Relationship to Diabetes:
    Type 1
    I wonder if anyone can help me with advice. I am 51 and have the following conditions. I struggle to walk more than a few yards without pain, struggle to cook meals etc etc and I am becoming increasingly dependent on my partner who works full-time so it is very difficult for him. I'm trying to find out services that can help me - if they exist, but I'm finding it a minefield navigating the system which is making me stressed and tearful and I don't have the money to have people help me because my only personal income is a very small pension that is less than ESA would be if I was entitled to it.. I'm not entitled to income related benefits because of my partner's salary. I know it's how the conditions affect me but if I wrote all of that this would be an extremely long message.
    Type 1 diabetes for 48 years, neuropathy, gastroparesis, facet joint arthrophy, chronic fatigue syndrome, chronic silent migraines, Menieres, mild-moderate hearing loss in one ear (I have a hearing aid), hypertension, high cholesterol, eye conditions - previous retinal vein occlusion which has caused visual impairment in my left macula, glaucoma, diabetic retinopathy,
     
  2. Docb

    Docb Well-Known Member

    Relationship to Diabetes:
    Type 2
    A way in might be through your partner. From what you say he is your carer, no question, you could not function without him being there. As such he is entitled to access to carer support and a carer's assessment. This is often provided by outside agencies acting as contractors to social services. The route in is either via social services (don't hold your breath in most areas) or self referral to who does the carers assessments in your area.

    Why I suggest this is that the carer support services often have a really good insight into the support services available for the person being cared for, after all the carer's life is a lot easier if the person being cared for is properly supported by the system.

    I know this because I am a carer (for somebody with a lot fewer problems than yourself) and have been through the system to the point where I now volunteer for the body that does carer support in our area. I will not tell you who that is because they are paid for by the local council and can only take on cases in their catchment area and this is dictated by council boundaries. Your GP surgery should have contact details for self referral to whomsoever does it in your area. Can be a bit of a postcode lottery I am afraid, but you might be lucky and have an organisation in your area which is as good as the one here.

    PS... Coming to terms with being a carer is a bit like coming to terms with diabetes. Once you pass that acceptance threshold, everything becomes easier.
     
  3. KARNAK

    KARNAK Well-Known Member

    Relationship to Diabetes:
    Type 1
    OH Amanda how the heck are you coping? @Docb states its a bit of a postcode lottery but help is there. When I was/is struggling I spoke with my doctor who called another doctor into his surgery and we discussed the help available. They contacted social services and also the Neurology department and Podiatric department and I am now under control of the Neurology & Podiatric departments as well as my D Consultant, DSN, Dietitian. Social services keep an eye on me but after learning how much it cost I declined their help, other people need their help more than I do and to be perfectly honest unlike you I can afford the help I require. Please go to your Dr and explain how you feel, print off your post if you are able and show the Dr, if not write it down they will know exactly how you feel. @Docb says your partner is your carer but he works so he cannot be a full time carer, I`m not sure of the criteria to qualify for help all I can advise you is of personal experience. My mother in law lived with us in her end years and my then wife was granted carers benefits but it was taken out of her state pension so no joy there. Get hold of your Dr, DSN, D Consultant any HCP you have access too, don`t give up lovely we are here for you.xxx
     
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  4. Stitch147

    Stitch147 Well-Known Member

    Relationship to Diabetes:
    MODY
    Can't offer advice but want to send a virtual hug. X
     
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  5. AJLang

    AJLang Well-Known Member

    Relationship to Diabetes:
    Type 1
    Thank you very much DocB, Ted and Stitch. I will speak to my partner about your suggestions DocB because, as you said, it's not the money but the access to other sources of help. I'm not sure how he will react because although he knows that he's my carer he doesn't really want to say that outside of the house and didn't want to get a carer's pack from the GP surgery but I will see what he says. Ted I love your suggestions but blimey getting someone at my surgery to help with this is nigh on impossible - the only two who I find helpful only work part-time and it is extremely hard to get an appointment with any of my GP's. My "named" GP has in the past dismissed my symptoms at different times over the years - but fortunately I got help from others because they each turned out to be major illnesses/conditions. Another GP doesn't listen and weighs me everytime I go in - so intent on that she missed that I had a bad chest infection on one occasion, instead she told me to eat a high fibre diet (which I can't with gastroparesis) - I only got help for the chest infection from one of the good doctors when I nearly lost the complete inability to walk the following week due to continuing weakness caused by the chest infection. I can't get routine appointments with my DSN and because my diabetes is complicated but under control they don't see the problems that I have - I'm meant to have six monthly pump appointments and even they're not happening. Sorry I'm going on. I promise not to give up.
    On a more positive note after writing my original post I got looking around the council website a bit more - it's the council that was in the papers because it nearly went bankrupt but the good part of that is they are working hard to improve their social services. Anyhow I've submitted an initial form for a care plan and they will phone me within the next week to do a more detailed assessment. I also phoned their "falls" team andI've been approved for one-to-one help over twelve weeks to help me with my independence - so I'm hoping that they will also point me in the direction of other sources of help. Sorry for the long message.
     
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  6. silentsquirrel

    silentsquirrel Well-Known Member

    Relationship to Diabetes:
    Type 2
    Last paragraph sounds positive, hope it leads to some useful help for you.
     
    AJLang likes this.
  7. Docb

    Docb Well-Known Member

    Relationship to Diabetes:
    Type 2
    Hi Amanda, was wondering whether your partner might be a bit reticent about being formally recognised as a carer - hence my last comment. Its not unusual.

    The reality is that nobody, other than who does the carers assessment and provides direct support needs to know. Its between your partner, the support service and his GP. The other reality is that when you ask for help and information, the people you ask have a gatekeeping role and if you do not know the system it is very difficult to break that down. Coming at it from the carers perspective can provide you with a carer support person who knows the system and how to crack it. Gates get opened that way.

    Anyway work on it. The carer's assessment process will help to get a lot of things into perspective anyway which might be helpful all round. Good luck.
     
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  8. AJLang

    AJLang Well-Known Member

    Relationship to Diabetes:
    Type 1
    Thank you DocB. I've just been reading the carer's assessment form for our area. I've downloaded the link to it for my partner and will show him your messages. Thank you so much for all of your help.
     
  9. Docb

    Docb Well-Known Member

    Relationship to Diabetes:
    Type 2
    Final point. What happens round here is that the form is filled out by the support worker, not the carer, in an interview. This allows the carer to ask questions and to get to know the professional and begin to work things out. May be different round your way but as I say the carers service round here is particularly good.
     
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  10. AJLang

    AJLang Well-Known Member

    Relationship to Diabetes:
    Type 1
    Thank you so much DocB for all of your help. Here it has to be filled in either online or over the phone. My partner has said that he will fill it in online but very honestly. We’ve both now realised just how how much of a strain my health has been putting on both of us.
     
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  11. TheClockworkDodo

    TheClockworkDodo Well-Known Member

    Relationship to Diabetes:
    Type 1
    Some of the support charities for your various conditions might also be able to help with accessing services and filling in forms, Amanda. I know Action for ME does this sort of thing - here's the social care page on their website, and here's the benefits page (I'm pretty sure not all of these are means tested) - they also have a helpline, and though they can't help with things like filling in forms any more, they might be able to point you towards the right benefits and/or services for you - https://www.actionforme.org.uk/living-with-me/our-services/information-and-support/

    I hope the contact you've made with the council proves helpful and also that your partner gets some support in his caring. Nearly everyone else I know with ME has some form of benefit/support/social care, so I'm sure you should qualify based on the ME alone, and I should have thought some of your other conditions would qualify you too. I'm not as ill as you, but I realised the extent to which R is also my carer when he fractured his spine and I was attempting to care for him.
     
  12. AndBreathe

    AndBreathe Well-Known Member

    Relationship to Diabetes:
    Type 2
    @AJLang - some months ago I attended a council sponsored Health and Wellbeing event locally. One of the groups there was from the Council. I can't remember the exact title, but it was something like Council Name Health and Wellbeing Partnership.

    Cutting to the chase, they offer a self-referral service where needs are assessed, for those struggling in some way. I'm sure I have described that clumsily at best and appallingly at worst.

    Anyway, allegedly they usually find, they'll take a referral from a family member, which might go along the line of, "Mum needs a bit of help with shopping these days", only to find when they go out to assess that the real needs are completely different.

    Mum might well need help with shopping, but she might not be doing too well toileting, or getting up and downstairs or whatever.

    Whilst my example describes someone of more advanced years, I believe there were no age limits. Once assessed, they then make any relevant referrals for more defined support.

    It could maybe be worthwhile to enquire with your own council if their wellbeing partnerships have anything similar.

    I was astonished it was a Council, rather than NHS or Social Services service, but hopefully the might be able to help.

    It's hard enough for an independent person to say they need help. It's then just much more cruel that they have to really search to access an assessment.

    Fingers crossed for you.
     
  13. everydayupsanddowns

    everydayupsanddowns Moderator

    Relationship to Diabetes:
    Type 1
    Glad to hear there is a glimmer of hope from your council Amanda.

    Everything crossed for you that you can get the support you deserve and need.
     
    Ditto likes this.
  14. AJLang

    AJLang Well-Known Member

    Relationship to Diabetes:
    Type 1
    Thank you everyone. Juliet I will look at the ME site and others related to my illnesses. Thanks for that information AndBreathe I will have a look to see if there is anything like that here xx
     
    Ditto likes this.
  15. Thebearcametoo

    Thebearcametoo Well-Known Member

    Relationship to Diabetes:
    Parent
    I’m glad you’ve managed to have contact with the falls team. Have they suggested an OT assessment? OT should be able to help with any adjustments to the home that might help (although the wait for equipment can be long).

    It’s worth keeping badgering for an appointment with one of the GPs you feel heard by and having a general chat about where you’re at and how you’re feeling. When we’re juggling chronic illness it can be too easy to just muddle along as trying to work out which bit is because of which illness is too difficult but you should still go when you feel bad otherwise things get missed (which I have just learnt the hard way, hello blood transfusion!)

    I know applying for PIP is a minefield but is it worth doing? You would then get a personal budget and can use it for carers, cleaners, buying ready meals, whatever makes life easier.
     
  16. SB2015

    SB2015 Well-Known Member

    Relationship to Diabetes:
    Type 1
    I have no. Specific ideas, I just hope that the practical advice others have given work out to be helpful.
    Take care
     
  17. Pumper_Sue

    Pumper_Sue Well-Known Member

    Relationship to Diabetes:
    Type 1
    It has been suggested on more than one occasion that you claim PIP, have you done so? PIP is not means tested and even the queen can apply for it if she so desires.
    The process is a tad long winded to put things mildly but unless you apply you wont get anything.
     
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  18. KARNAK

    KARNAK Well-Known Member

    Relationship to Diabetes:
    Type 1
    Hello again Amanda, just checking how you are? I see PIP has been mentioned several times, the criteria is very strict and you may have to have an interview with a HCP. As already stated it is very long winded and can be a pain with all the paperwork, I got Age Concern to advise me but I did have a neurological care plan set up before I started the process and I am now fully Pipped up as @mikeyB says. Its worth a shot so go for it, we have a Health and Well Being centre in Paignton which I attend every six weeks for my legs and feet but it is NHS controlled. I see you have had a bit of success so keep at them and any HCP you come into contact with, take care, thinking of you.xx
     
  19. AJLang

    AJLang Well-Known Member

    Relationship to Diabetes:
    Type 1
    Thank you everyone for your help. I keep finding applying for PIP completely mesmerising but I am now working towards applying for it because for the first time I can now see that I could get the right level of points, or at least might get them.
    Thank you Ted for asking how I am. After Wednesday’s ambulance ride I’m beyond exhausted but feeling a bit better each day. I even managed to go to the pub for an hour today and before that spent 15 minutes on a short story for my creative writing diploma. But just that has left me with very little energy, but it was good to get out today. I’ve got an appointment with my good GP for October 31st and I am waiting for the results of some blood tests. My first “falls” appointment is in late October/early November when I will ask about an OT assessment.
    Thank you everyone for all of your help x
     
  20. KARNAK

    KARNAK Well-Known Member

    Relationship to Diabetes:
    Type 1
    High Amanda its great you have OT involved, it will probably change your life for the better. A bit of advice about PIP`s walking more than 30 yards without stopping to catch your breath may compromise your application, just say it the way it is, I have a spine problem so have too stop and click my back into place, otherwise numb arms and tingly hands and feet then a visit to the ground. Hope everything works out for you, please keep in touch.xxx
     

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