Disability living allowance for over 16's with diabetes

calleyw

davefrombristol wrote: »

So maybe you want to consider that you, along with countless others are maybe missing out on a benefit that you are entitled to - and recognise that I might not be able to fully recognise what sort of care is needed to manage your husbands condition - the same as you cannot begin to realise what sort of mental and physical effort I have had to go through every day to try and manage my daughters condition and keep her safe.

No people are not missing out on benefits because they don't have care needs.

Do you have any idea of how much and the type of care that is needed to get DLA care even lower rate as an adult.

No, because under 16 the rules are less rigid and different. You need to read up and see under what the rules are to claim DLA care as a adult.

To get DLA care lower rate you need to have under one hours of care a day and not be able to pre-prepare a meal.

To get middle rate it is the above and at least an extra hour of care every day.

You don't get extra points because of what someone might do. My husband has had a stroke caused by a life threatening condition that almost killed him. The condition on it's own does not cause him any care needs as long as his takes his tablets.

Just like diabetes as a condition on it's own when medicated properly does not cause needs. That is the point you are missing. And DLA expects over 16 to be able to cope with the condition. Not fair but nothing is.

Going back to my husband he is not safe left for long periods and I spend my day at work worrying has fallen over and hurt himself etc. I phone and text him a million times a day to see if he is ok. Does that count as care? Not according to DLA it is not.

You daughter has more complex needs than most does this stem from diabetes or something else? Would she still have had the mental health problems if she was not a diabetic?

I wish you and your daughter well and think you need to go get help filling in the form. As the system is the system and people on this forum did not create it. I think you would be better off using your energy to deal with the situation you are in.

Rather than telling us who are already in the system as adults that we are not claiming correctly.

Yours

Calley

Indie_Kid

davefrombristol wrote: »

Six years ago when I was in the childrens hospital the diabetic nurse gave me the information pack for DLA and pointed out that the care element would entitle me to medium rate DLA which then qualifies you for Carers Allowance ( as long as your not over the earnings threshold ) Therefore I paid particular notice when filling out the care component of the form. ( Certainly wasn't naive there ! )

It's not up to medical professionals (who are generally not full aware of how the benefits system operates) what rate of DLA someone gets. Whilst they may know the basics (ie, what you can claim if working, if your child is disabled, etc.) they don't know the ins and outs of the system. I have a completely different medical condition, but was told I would not get DLA

wendall

Diabetes in a lot of cases can be controlled by diet and injections my best friends daughter being one of them no problems in the 12 years since she was diagnosed but my daughter was diagnosed with type 1 diabetes age 4, under active thyroid gland age 6, coeliac disease age 10, which meant her control could be at times chaotic. Her hypos used to and still do result in her going unconcious she gets no warning and drops wherever she is on one occasion on her bike going downhill that resulted in a cut head and leg, her DLA stopped the moment she turned 16. She now has diabetic retonopathy and at the moment is undergoing eye surgery, she now has one operation left to go and then she will be registered partially sighted or blind depending on the last op, she cannot work at the moment as she has had 4 major operations on her eyes in the past 12 months and hopefully the last one will be in December to stop the retina detaching in her left eye, but we were told to fill in the DLA and she is entitled to the lower rate in mobility and care even though she cannot cook for herself and has to have someone with her all the time in places she does not know. She was not a rebellious teenager and always did her injections does not drink alcohol and controls her diabetes the best she can. We never appealed against the decision when she was 16 even though we did feel as some of the other posters said that the care does not stop the day after they are 16. I hope you get sorted whichever way it goes and wish you luck. I applaud Gemma for the mature attitude that she has on coping with life as a diabetic.

krisskross

sh1305 wrote: »

It's not up to medical professionals (who are generally not full aware of how the benefits system operates) what rate of DLA someone gets. Whilst they may know the basics (ie, what you can claim if working, if your child is disabled, etc.) they don't know the ins and outs of the system. I have a completely different medical condition, but was told I would not get DLA

Off topic i know but i thought you had flounced off.

sllimd

Just had a quick read through some posts on here and I have to say how people can be judgemental with their ignorant comments on the issue I really don't know. There is a reason diabetes takes more money from the NHS than anything else. Diabetes IS a DISABILITY!! And unless you are type 1 diabetic you will NEVER really truly know what it is like to live with. Even my own mother who obviously has a lot of experience dealing with me for almost 22 years (almost 25) still asks me questions about how it affects me and how I deal with it. If I was to explain on here what diabetes is like from my point of view, space on the internet would be marginal. Anyway, rant out of the way! I was 16 when I applied for DLA the 1st time and got the lower rate of about £15 p/w back then without having to list a whole number of reasons as to why I should be entitled to it but when I had to renew I was told that I was no longer entitled to it, which was a bit of a shock as Diabetes never gets better, it only gets worse and has more and more physical effects.... It isn't much but it DOES help, especially if you are from a poor background and when the NHS never wants to give you the latest insulin pens bm machines or tell you about pretty much anything that is newly available. Earlier in the year for example I asked my doctor about wanting to change insulin since I had been on the same one for over a decade and knew there must have been something better. I was met with a response that said it was to much effort for him to be bothered. Even though I'm the 1 who has to deal with it. Six months later...... my insulin is being discontinued.... thanks.... thanks for the help...... thanks for going out of your way to do something for me. Thank you very much!! What a joke!

Indie_Kid

sllimd wrote: »

J Anyway, rant out of the way! I was 16 when I applied for DLA the 1st time and got the lower rate of about £15 p/w back then without having to list a whole number of reasons as to why I should be entitled to it but when I had to renew I was told that I was no longer entitled to it, which was a bit of a shock as Diabetes never gets better, it only gets worse and has more and more physical effects....

Because as an adult, you're expected to be able to deal with the injections and other stuff yourself. Unless you have another disability which prevents this.

hobbledehoy.

sllimd wrote: »

Just had a quick read through some posts on here and I have to say how people can be judgemental with their ignorant comments on the issue I really don't know. There is a reason diabetes takes more money from the NHS than anything else. Diabetes IS a DISABILITY!! And unless you are type 1 diabetic you will NEVER really truly know what it is like to live with. Even my own mother who obviously has a lot of experience dealing with me for almost 22 years (almost 25) still asks me questions about how it affects me and how I deal with it. If I was to explain on here what diabetes is like from my point of view, space on the internet would be marginal. Anyway, rant out of the way! I was 16 when I applied for DLA the 1st time and got the lower rate of about £15 p/w back then without having to list a whole number of reasons as to why I should be entitled to it but when I had to renew I was told that I was no longer entitled to it, which was a bit of a shock as Diabetes never gets better, it only gets worse and has more and more physical effects.... It isn't much but it DOES help, especially if you are from a poor background and when the NHS never wants to give you the latest insulin pens bm machines or tell you about pretty much anything that is newly available. Earlier in the year for example I asked my doctor about wanting to change insulin since I had been on the same one for over a decade and knew there must have been something better. I was met with a response that said it was to much effort for him to be bothered. Even though I'm the 1 who has to deal with it. Six months later...... my insulin is being discontinued.... thanks.... thanks for the help...... thanks for going out of your way to do something for me. Thank you very much!! What a joke!

Hello,

I am Type 1, caused by the pancreas slowly digesting itself.
In the years that I have had this all that is needed is the correct type and amount of insulin. There is no reason on this earth as to why you can't have a full life and eat more or less anything you want. I actually have syrup with my porridge every morning, and eat cakes and biscuits as normal. Remember the insulin is there to help you live your life having diabetes, not that your life is ruled by Diabetes.
Unless there are any consequences or complications caused by diabetes, you would certainly not be entitled to DLA. Even more so, diabetes on it's own is not even a reason or entitlement to receive ESA!!

However, my other medical problems do entitle me to claim ESA (well I think so!) but as regards DLA, it is again highly unlikely (but I was intending to find out but gave up).

I have never met anyone that has diabetes alone that has said that they are disabled in any way or form.

sllimd

There will come a point when you know it's catching up with you! 99% of the time a person without diabetes will be between 4 and 6 mmol. If you can achieve that 80% of the time as a diabetic you are doing good. Fact is though, it's not good enough and there will be consequences. If I make it to 50 I will consider myself extremely lucky.

I knew someone who had both legs amputated, kidney failure and died after low blood sugars because he lived on his own and their was nobody to help him. I've been in the situation a few times after waking up where if there wasn't somebody in the house to help me that could have been it. When I can't even talk properly let alone try to open the bottle of lucozade which sits next to my bed or waking up, putting 2+2 together and coming up with 74 thinking I'm going crazy because I was 110% sure it was a saturday, when the tv was telling me it was sunday, I look outside, can see no cars going past, no people, no sound, no nothing. Still trying to work out what's going on, even asking myself "am I dead" I go to make myself some beans on toast, just about to turn around and put the tin lid into the bin when still fully conscious, my body goes rigid (no gillian mckeath style faints) straight on my back. How I didn't smack my head off the floor (or drop 1 bean) without putting my arms out I don't know but as soon as I hit the floor I was back up on my feet and ate the sugar straight from the jar. And no disrespect to type 2's but I would cut a finger off with a spoon to be type 2.

Diabetes is a complicated disease and people, some of who can barely afford to eat healthily, would benefit greatly and probably SAVE the NHS money in the long run. I'm not that bothered about the fact I can't get DLA though but when I have to beg and plead for things from a health professional, and they say you need to look after yourself and its really important that this and that blah blah blah blah..... that really does take the ssip! They're looking to save money... I want to live as long as I can! Has anyone got a novopen 4 from the NHS btw?. I would like 1 but it looks like I'm going to have to buy it myself!

preciousillusions

sarah_loo wrote: »

I was diagnosed with Type 1 Diabetes at the age of 15, I'm now 21. I managed my diabetes perfectly up until the age of 19, I'd started to be rebellious against my condition. I found that not injecting my insulin would help me to lose weight and this is extremely common in teenagers and young adults. I've now been diagnosed with Diabulimia, which is an eating disorder. Over the past 2 years I've been in and out of hospital umpteen times with diabetic ketoacidosis, which can be fatal. I've been referred to the mental health team at my local hospital. I have to be supervised on a daily basis by friends and family to ensure I take my insulin, which I must admit can be very hard when you have issues with your weight. So tell me I'm not entitled to DLA am I not at risk to myself?? Of course I am.

People that have posted in this thread have infuriated me saying how it's something you have to live with, yes you do, but it can be extremely hard for some people to come to terms with. You don't know what it's like unless you actually have the condition itself.

I also suffer from diabulimia, as well as other eating disorders. Diabetes and eating issues are such a bad mix, i am sorry you are going through that too Sarah.

Some of the posts in this thread makes me so angry and upset tbh. I read the first and last pages and don't think i can bring myself to read anymore. Some people just don't get it.

Just a point to reflect: I study journalism and once interviewed a diabetic girl that had become blind through not taking her insulin/ She told me that she would rather be blind that diabetic if she had a choice, because the diabetes was harder to bear and to control. It's such an emoitonal illness as well as a physical one.

Davefrombristol - i am really sorry to hear about your daughters struggles too. I hope so much that she can get some help and back to her usual self. I was also diagnosed at 9 and it can be so hard being a teenager and diabetic, you can never be just 'normal' like all of your friends. Diabetes unfortunately does tend to go hand in hand with mental health problems a lot of the time, it's just so exhausting and at times can feel like a losing battle. But your daughter can get through this with the right support and understanding.