Anyone receiving DLA (PIP) for type 1 diabetes

[Mrs Elaine Joyce Perkins]

Hello everyone,

After 26 years of being a type 1 diabetic I finally tried to claim PIP the new form of DLA.

I have been a well maintained diabetic and do my blood level checks 4 times daily before each injection altering my amount accordingly. I walk every day and work out five times daily to keep off the excess pounds insulin piles on you but they never tell you that,I drink socially once a week,vodka and diet coke and I try to keep to a healthy diet.

Fortunately I have no diabetic problems except recently from my last eye check I am going blind in my right eye with a cataract and I have some days up to 3 hypos even with my regiment. I find this exhausting. I also have spondulitus in my kneck ie extra bone growth and depression which I have suffered with for many years which my doctor says is normal when you live with a chronic illness.

According to PIP I do not deem ill enough to receive this benefit and I am wondering whether to put myself through a appeal. I live in Liverpool and the assessment was in Crewe!!!!!!! My separated partner took me.

Apparently because I can:
Prepare Food
Take Nutrition
Manage & monitor my condition
Manage going to the Toilet
Dress & undress myself
Communicate
Read & understand signs
Engage with people
Make budgeting decisions
Plan journeys
& finally Move Around
I do not qualify but on the assesement day I explained that I can do all those things but I cannot when I have my hypo attacks and the more I have the more it takes out of me and longer to recover sometimes needing to go to bed.

This has only made my depression worse. My husband of 25 years have recently asked to separate and I have no income and have not worked for last 3 years. What I do not understand is PIP is not means tested so you can work and I do want to find work yet is you fit the above criteria surely you would not be able to work!!!!!!!! I am dumb founded and frustrated.

Any advice or is there anyone else who has been able to receive DLA (PIP)

Thank you
Elaine

 

[Pumper_Sue]

Hi Elaine,
Welcome to the forum.
Unless you are disabled for most of the time by what ever condition you have you do not qualify for PIP. Having diabetes alone is not a qualifier. Have you spoken to your care team about your hypos, if so what solution do they offer to fix the problem? If under a GP then perhaps ask for a referral to a hospital team who will be able to offer more advice and perhaps a pump.

PS, the cataract is easy to fix and the op is a doodle so do not worry about that.

 

[Mrs Elaine Joyce Perkins]

Thank you Sue, yes I got referred and put on to lanctus which has improved the fact that my night time injection has gone from 50 units to just 28 and I think I could probably lower it again which I am in units of 2, just finding a effective level. The consultant wouldn't consider me for the pump as he said my levels were that good the pump wouldn't improve anything.

We just have to get on with it as I have for all these years but I bet those giving out these decisions have full health and just want to try being a type 1 diabetic for just one week and see how they like it. I always try and think of someone worse off than me.

Take care of yourself and thank you for your help and support.

Elaine.

 

[AlisonM]

I have PIP, but not for the diabetes, other conditions mean I struggle to walk more than 30 metres and with ordinary daily tasks such as dressing myself and preparing food. I also suffer from depression and anxiety which make it hard for me to cope outside the house or in strange situations where I don't know anyone. These issues mean I am unable to leave the house without a great deal of planning and anxiety, levels of pain are such that I rarely go out anyway unless I have to and I must make use of what little energy I have to do ordinary daily things like cooking. Unless your situation is such that your life is seriously hampered on an ongoing daily basis you are unlikely to be allowed a claim for PIP. The rules for qualification have been tightened in the last couple of years and I'm waiting for the decision on renewal of my own claim amid serious concern that I may lose the payment.

Having said that, I suggest you contact the CAB (Citizen's Advice Bureau) in your area and see what they have to say. They have a great deal of experience dealing with claims for ESA and PIP as well as other benefits and may be able to help you.

I would also return to your doctor, or better still, the local diabetic clinic and discuss these recurring hypos with them urgently. I'm LADA and struggle with recurring hypos as well though they are becoming less frequent as my pancreas slowly fails. Are you on Lantus alone or do you have a short acting insulin such as Novorapid as well? If not you need to ask whoever you talk to about going on multiple daily injections (MDI) which would mean a much reduced amount of Lantus and an injection of the fast acting with each meal and might give you better control.

 

[trophywench]

Do the hypos happen usually at the same-ish times a day/night Elaine?

It could be a timing issue for the Lantus, you may be better of jabbing it at a different time of day or you may be better splitting it into 2 jabs. Or you might be better swapping it again to Levemir - but you do have to split that, it is supposed to be 2 x daily. Also are these disposable pens? I thought they now came in 1 unit divisons anyway?

A lot of pens now, one can do half-unit doses, not just 1u !

 

[Northerner]

Do the hypos happen usually at the same-ish times a day/night Elaine?

It could be a timing issue for the Lantus, you may be better of jabbing it at a different time of day or you may be better splitting it into 2 jabs. Or you might be better swapping it again to Levemir - but you do have to split that, it is supposed to be 2 x daily. Also are these disposable pens? I thought they now came in 1 unit divisons anyway?

A lot of pens now, one can do half-unit doses, not just 1u !

Autopens can deliver up to 21 units in single units, or 42 units in 2 units a time, so Elaine still needs the 2-unit pen if she's using one of those.

 

[AJLang]

Hi Elaine I'm really glad that you've kept your diabetes well maintained and hope that you get your hypos sorted out.
I've looked at the criteria for PIP a few times and despite no longer being able to work after 45 years of diabetes due to gastroparesis, CFS/ME plus foot neuropathy and various musokeletal problems, oh yes and various eye problems, SVT and probably something that I've genuinely forgotten about, I don't think that I would meet the PIP criteria. As Alison suggests do speak to CAB. Good luck with everything.

 

[Amberzak]

(I said this on another thread) I'm high functioning autistic type one diabetic With joint hypermobility and coeliacs and I'm not entitled to pip

 

[Mrs Elaine Joyce Perkins]

Autopens can deliver up to 21 units in single units, or 42 units in 2 units a time, so Elaine still needs the 2-unit pen if she's using one of those.

Thank you I just think its awful that our condition isnt being recognised as being bad enough for anyone to take notice of but we all know we are the strong ones as weve had to be and will continue to be.

 

[Mrs Elaine Joyce Perkins]

(I said this on another thread) I'm high functioning autistic type one diabetic With joint hypermobility and coeliacs and I'm not entitled to pip

My consultant wouldn't offer me a pump as he said my levels were that good the pump wouldn't be of any benefit. Glad it's made your life better though. Terrible our disability isn't recognised or deemed important enough to give us some kind of support.

 

[Mrs Elaine Joyce Perkins]

Do the hypos happen usually at the same-ish times a day/night Elaine?

It could be a timing issue for the Lantus, you may be better of jabbing it at a different time of day or you may be better splitting it into 2 jabs. Or you might be better swapping it again to Levemir - but you do have to split that, it is supposed to be 2 x daily. Also are these disposable pens? I thought they now came in 1 unit divisons anyway?

A lot of pens now, one can do half-unit doses, not just 1u !

I take three injections daily for breakfast,dinner & tea,Humalog and always check levels before giving dose then last needle at 10 I'm starting to reduce lanctus at 28 at moment so dropping by 2 units and monitor. I have seen a great drop in weight of 8lb so that's a plus, I will just get on with it like always and hope those people in there wisdom never get type 1 diabetes. Thank you

 

[trophywench]

The reason I asked about a timing issue was because Lantus does not have a flat profile although when it was first marketed, it was said that it did. It never has! It builds up to a peak at about 4- 5 hours after jabbing it and then descends again more gradually to whatever level for the next 12 hours, then even more gradually tails of to nothing.

It doesn't last exactly 24 hours and then stop, either - it can last a lot longer than that - in fact when you alter your dose up or down, you can't actually tell exactly what effect that's had on you until a full three days later. This makes the effort of trying to get it 'just right' far more time consuming. On the other hand - one can usually tell with Levemir almost immediately - certainly within the first 24 hours it will be apparent whether it's going in the right direction or not. Certainly by the following day you would have a FULL picture of whether it has done the trick or not. If not, you'd be able to adjust it again tomorrow if you needed to. The words I have always used about Levemir in comparison to Lantus, is that Levemir is far more 'biddable' than Lantus. You tell it to 'quieten down' cos you're going hypo - it quietens down immediately you reduce it - istead of reducing Lantus and then still having the hypos for another few days.

If you take your foot off the accelerator cos you are driving too fast, you couldn't wait days for the car to slow down, could you? But insulin is a lethal weapon if you drive it wrong - the same as a car!

I also suggest you do some BG testing to see where your Lantus is performing well and when it isn't - with that info you can make informed judgements regarding your dosing and the timing of your jab(s) - see http://www.diabetes-support.org.uk/info/?page_id=120 for an explanation of how.

 

[Amberzak]

My consultant wouldn't offer me a pump as he said my levels were that good the pump wouldn't be of any benefit. Glad it's made your life better though. Terrible our disability isn't recognised or deemed important enough to give us some kind of support.

I fought for 10 years for my insulin pump. In the end I moved my diabetes care to a different area to get it. I didn't just get given it. I worked so very very hard to get it.

 

[trophywench]

Sorry Mrs Perkins - I don't regard MY diabetes as a disability - except when I've needed to, I mean! eg when my employer suddenly decided one day to ORDER me to stop testing or injecting at my desk. My section head told them it would not be possible to not do the former (H&S) and she discussed the latter with me. I asked what facilities they were going to provide for me to jab elsewhere. Then the arguments started - why can't you go - in a cubicle!! - in the ladies? in a complete tone of disbelief when I answered her and her boss.

THEN I played the disability card. It did end very unhappily - with some money admittedly. Not what I wanted at all at the time ......

Still - it paid the mortgage off ! LOL

 

[Amberzak]

I wasn't allowed to keep hypo treatment on my when I worked at the cinema, but they also wouldn't let me leave my post to get hypo treatment. So that caused problems.

But I'm wkth you trophy. The diabetes is something where allowances need to be made (like I'm allowed to test my sugars and have food in an exam) so it is a disability from that point of view. But I don't need help for it. I need more help from my autism as that's the condition that would make living alone really hard. If people get complications from diabetes and have to lose a leg that's different.

We get free prescriptions. That's a great deal of support.

 

[Pumper_Sue]

Thank you I just think its awful that our condition isnt being recognised as being bad enough for anyone to take notice of but we all know we are the strong ones as weve had to be and will continue to be.

Hi Elaine, it's not the condition you have it's how it affects you that counts. The fact you told the assessor that you could do all the things on the list automatically disqualifies you for PIP. If every diabetic in the land was paid for having diabetes then the country would be more bankrupt than it already is.
If your GP say's you are to sick to work then claim ESA if not then JSA.
I think also you need to look on the INPUT site for the NICE guidelines for a pump and if you fit the criteria then ask again for one. If no joy then ask your GP for a referral to a pump friendly clinic. Have you looked into a CGM or the Libre so you can see exactly what is happening and why regarding your hypos.

 

[GaryandKatie]

Elaine, I too would like any help or advice on claiming PIP.
Katie, my daughter, was diagnosed with type 1 diabetes in December 2008 at the age of nine. We were advised by her Paediatric Diabetes Specialist Nurse to apply for DLA, which was granted to Katie. On turning sixteen Katie had to re-apply for the new PIP. The original decision awarded her zero points for both Daily Living and Mobility components. We requested a mandatory reconsideration and the revised decision awarded four points for Taking Nutrition and one point for Monitoring a Health Condition but, still zero points for the Mobility Component.
We have requested an appeal to an independent tribunal because we don't believe that the decision can be taken that on reaching the age of sixteen a child suddenly becomes fully responsible for managing their diabetes. The support and supervision from parents is probably required even more in most of the elements of the Daily Living component due to the changes they are going through as teenagers. It is also our belief that the Mobility component does not adequately consider the safety aspects involved with a teenage diabetic 'Going Out', requiring someone to be with them who understands what to do if they have a 'hypo'.
We hope to convince the Tribunal that the DWP have got it wrong and that sixteen year olds with type 1 diabetes cannot be totally independent/responsible. If they are expected to stay in some form of education until the age of eighteen and Child Benefit is received for them until eighteen and, moreover the NHS does not transfer them to Adult Diabetic Clinic until the age of nineteen, why does the DWP see them differently? To cut costs!
I would be grateful if anyone has any experience of claiming PIP to get in touch or any advice that can be offered.
I would like to think that overturning the DWP decision for Katie might help others in the same situation so teenagers with type 1 diabetes are treated fairly. Thank you.

Hello everyone,

After 26 years of being a type 1 diabetic I finally tried to claim PIP the new form of DLA.

I have been a well maintained diabetic and do my blood level checks 4 times daily before each injection altering my amount accordingly. I walk every day and work out five times daily to keep off the excess pounds insulin piles on you but they never tell you that,I drink socially once a week,vodka and diet coke and I try to keep to a healthy diet.

Fortunately I have no diabetic problems except recently from my last eye check I am going blind in my right eye with a cataract and I have some days up to 3 hypos even with my regiment. I find this exhausting. I also have spondulitus in my kneck ie extra bone growth and depression which I have suffered with for many years which my doctor says is normal when you live with a chronic illness.

According to PIP I do not deem ill enough to receive this benefit and I am wondering whether to put myself through a appeal. I live in Liverpool and the assessment was in Crewe!!!!!!! My separated partner took me.

Apparently because I can:
Prepare Food
Take Nutrition
Manage & monitor my condition
Manage going to the Toilet
Dress & undress myself
Communicate
Read & understand signs
Engage with people
Make budgeting decisions
Plan journeys
& finally Move Around
I do not qualify but on the assesement day I explained that I can do all those things but I cannot when I have my hypo attacks and the more I have the more it takes out of me and longer to recover sometimes needing to go to bed.

This has only made my depression worse. My husband of 25 years have recently asked to separate and I have no income and have not worked for last 3 years. What I do not understand is PIP is not means tested so you can work and I do want to find work yet is you fit the above criteria surely you would not be able to work!!!!!!!! I am dumb founded and frustrated.

Any advice or is there anyone else who has been able to receive DLA (PIP)

Thank you
Elaine

 

[Northerner]

Elaine, I too would like any help or advice on claiming PIP.
Katie, my daughter, was diagnosed with type 1 diabetes in December 2008 at the age of nine. We were advised by her Paediatric Diabetes Specialist Nurse to apply for DLA, which was granted to Katie. On turning sixteen Katie had to re-apply for the new PIP. The original decision awarded her zero points for both Daily Living and Mobility components. We requested a mandatory reconsideration and the revised decision awarded four points for Taking Nutrition and one point for Monitoring a Health Condition but, still zero points for the Mobility Component.
We have requested an appeal to an independent tribunal because we don't believe that the decision can be taken that on reaching the age of sixteen a child suddenly becomes fully responsible for managing their diabetes. The support and supervision from parents is probably required even more in most of the elements of the Daily Living component due to the changes they are going through as teenagers. It is also our belief that the Mobility component does not adequately consider the safety aspects involved with a teenage diabetic 'Going Out', requiring someone to be with them who understands what to do if they have a 'hypo'.
We hope to convince the Tribunal that the DWP have got it wrong and that sixteen year olds with type 1 diabetes cannot be totally independent/responsible. If they are expected to stay in some form of education until the age of eighteen and Child Benefit is received for them until eighteen and, moreover the NHS does not transfer them to Adult Diabetic Clinic until the age of nineteen, why does the DWP see them differently? To cut costs!
I would be grateful if anyone has any experience of claiming PIP to get in touch or any advice that can be offered.
I would like to think that overturning the DWP decision for Katie might help others in the same situation so teenagers with type 1 diabetes are treated fairly. Thank you.

Hi GaryandKatie, welcome 🙂 You might be able to find more information at the Children with Diabetes website.

 

[Copepod]

Welcome to the forum, GaryandKatie.
DLA for children was slightly different to DLA for adults, as children could not qualify for Low rate Care under main meal test, and had to have care needs substantially in excess of those of children of same age without their problems. It was very usual for children with type 1 diabetes to stop getting DLA when they turned 16 years, or sometimes younger. The assumption is that as a child gets older, they gain knowledge, experience, independence etc so that they need less help from others to manage their condition.
It is unfair that PIP is described as a working age benefit, when children have to be in education at age 16 yeasr when PIP begins. It doesn't have a supervision element like DLA. Good luck with tribunal, but I think you will have difficulty persuading panel that a 16 year old can't manage the 10 care criteria MOST OF THE TIME. While she couldn't manage budget while hypo, fo example, she could wait until blood glucose levels are normal. Mobility component has two criteria, one about planning journey / psychological / sensory aspects, the other physical ability to walk. You need 8 points to get standard rate of either component; it is not possible to get an award if you get some care and some mobility points adding up to a total of 8. For enhanced rates of either, you need 12 points.

 

[Amberzak]

Might have already been said, but there are jobs people can do when they are on pip. Look at Stephen hawkin.

I have a friend who has duchenne muscular dystrophy (same thing my brother died of). He needs carers all the time. Permanently in a wheelchair. But he works too. Call centre. So there are lots of people who get PIP who also work.

Good luck