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Welcome to the forum, Dizzy58. I'll leave @Hannah M to answer your question about PIP, but bascially PIP (like DLA in the past) is awarded based on how a person is affected by problems, not solely on the basis of a diagnosis. Qualifying periods means that a fluctuating condition is more difficult, but you can apply for supersession (review of an existing award). Unfortunately, many people who used to qualify for Higher Rate Mobility of Disability Living Allowance, do not qualify for Enhanced Rate Mobility of PIP, although physical and psychological / sensory issues can be combined to earn the required 12 points. You can use any PIP money towards paying for a car, insurance, VED etc, although you can only qualify for a Motability car is you get ERM of PIP.
 
Hi @Dizzy58 and welcome to the forum 🙂 - Thank you so much for sharing your story with us, you may wish to start your own thread in the Newbie section - there are some great folk on here who I'm sure would be happy to welcome you with a little more support and advice.

Thanks @Copepod for clarifying eligibility around PIP, you are right about the difficulties around fluctuating conditions. Unfortunately, the way that the eligibility is assessed with the PIP, it does not lend itself well to conditions such as diabetes. @Dizzy58 - thanks for highlighting the issues around neuropathy as a disability. I will look into whether this is something that has already been raised and if not, I will raise this concern for you. I will find out further details and ome back to you with more information.
There is an organisation called Turn2Us who provide advice and support around benefits and grants who you may find helpful: https://www.turn2us.org.uk/

On a side note, if you would like to talk with someone about neuropathy or amputations, you could call the Helpline on 0345 123 2399 (Mon - Fri, 9am-7pm) and go over these concerns with them.
 
I have volunteered at a few "Care Events" for T2 with Duk. They are good for people to attend & gain info ! 😎
 
There is no point in lobbying anyone with regard to "recognising" neuropathy as a disability. PIP Mobility payment is solely based on the ability to walk, with or without walking aids. It doesn't matter what is causing the disability, or what conditions are combining to cause the disability. If you can walk, with or without aids more than 10 yards then you will not qualify for the higher rate. If you can walk more than 50 yards, you will not receive the mobility award at all. It is as simple as that.

I know this because I have a purely motor neuropathy which has caused significant leg muscle weakness. I can walk more than ten yards with a stick for support, but for longer distances I have to use a wheelchair. I do not qualify for the higher rate mobility award, but receive the lower rate. Only the higher rate can be converted for use as a motability car lease. That doesn't prevent me from getting a "blue badge", though.

It is this specification of walking distance, that was not present in the old DLA rules, that has caused problems for people renewing their motability lease, and in converting from DLA mobility allowance to PIP. The people who park their motability cars in the disabled spaces, then push their shopping trolley round Tesco are the main ones affected by this change, but there are people like me with quite severe walking impairment who now can't get the higher rate. This is an example of the government's push to target benefit payments on the really needy - that's what they say- but it's really to save money by making the rules so strict that the amount paid out is reduced without care for the disabled.

But as I said, it doesn't matter what the diagnosis is, it's how it affects your walking ability. I've got neuropathy, but the DWP don't care, they just want to know if I can walk or not.
 
The distances are 20 metres and 50 metres, not 10 yards and 50 yards. Repeatability, speed, safety etc are also considered. If a person has sensory (sight / hearing) / cognitive / psychological issues, points for these can be combined with physical difficulties for PIP, which wasn't possible for DLA.
 
Sorry, typo on the lower limit, but at these distances metres or yards is not a great difference. It is the imposition of fixed distances that is important. And you say repeatability, speed and safety are considered, but these parameters are not fully addressed in the structure of the questions on the application form, nor are they discussed in the assessment examination. They just don't ask the right questions to elicit such information. If they did, I would guess that far fewer people would fall through the net. And far fewer people would be successful at appeal.

I should add that I was a gatekeeper in benefits (military rather than civilian) before being an applicant in civilian benefits. I know the games that are played, and the government mindset.
 
Diabeticliberty said:
Possibly a little bit of an awkward subject but is anything being done in an effort to educate or re educate some of the more dogmatic members of the GP and practice nurse fold in an attempt to make them a little bit more empathetic to type 1 and type 2 diabetics who wish to play their full part in the effective management of their own condition but are restricted from doing so by having such basic requirements as test equipment restricted? I am aware that Diabetes UK does offer a support service for patients who encounter significant difficulty and I fully applaud them for that. Perhaps though it might finally be time to address the problem from a different direction. I do not ask this from my own current situation but you must appreciate that even on my very short time here I see almost daily some very poor and fairly desperate sounding individuals who just want as long and as healthy a life as good management will allow them. Adequate testing is a cornerstone in this management. Perhaps the doctors might benefit from the occasional nudge to keep them focused on this point.
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The gp practices could not afford to give every type 2 diabetic a machine! Its important for type 1s but i am afraid we type 2s should, rightly buy our own
 
Neety41 said:
The gp practices could not afford to give every type 2 diabetic a machine! Its important for type 1s but i am afraid we type 2s should, rightly buy our own
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I think you might find that the very high possibility of significant life restricting complications associated with poor diabetic control are just as relevant to type 2 diabetics as they are to type 1's. With all of the diabetics that I personally know poor control and lack of effective testing are usually associated. If you do not give type 2's the chance to test by refusing to supply them with test equipment it is very short sighted as I believe you are storing up a great deal of financial burden for the health service in years to come. You are also storing up a very poor quality of life for diabetics afflicted by complications. To only have type 2 diabetics test themselves with the financial means to fund testing is cynical in the extreme. Being poorer should not mean you are not entitled to the very best health care that the state can provide
 
Neety41 said:
The gp practices could not afford to give every type 2 diabetic a machine! Its important for type 1s but i am afraid we type 2s should, rightly buy our own
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Not all of us type 2's can afford to buy the strips on a month to month at £23 to £25 per pot
 
Neety41 said:
The gp practices could not afford to give every type 2 diabetic a machine! Its important for type 1s but i am afraid we type 2s should, rightly buy our own
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It's not just the not supplying meters or strips. It's the lack of support, information and guidance. Even the straight out discoragement of doing anything. Also, the cost is a problem for myself as i have little money.
Not testing, not having the help to do so effectively ad the active dismissal and discouragement damages our ability to manage our condition. It effectively prevents us from ever contoling our diabetes and makes it much more likely we'll just give up and just sit at home all day. Eating cake and biscuits.
 
Ralph-YK said:
It's not just the not supplying meters or strips. It's the lack of support, information and guidance. Even the straight out discoragement of doing anything. Also, the cost is a problem for myself as i have little money.
Not testing, not having the help to do so effectively ad the active dismissal and discouragement damages our ability to manage our condition. It effectively prevents us from ever contoling our diabetes and makes it much more likely we'll just give up and just sit at home all day. Eating cake and biscuits.
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Neety41 said:
The gp practices could not afford to give every type 2 diabetic a machine! Its important for type 1s but i am afraid we type 2s should, rightly buy our own
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I have to disagree with this. Test strips should not be prescribed will nilly, I do agree, but this should be decided on an individual basis, not a 'blanket ban' based on the assumption that the only reason you might need to test is if you are at risk of hypos, and that the information provided is useless otherwise - it is most definitely NOT useless. @Ralph-YK sums it up perfectly 🙂

The sad fact is that, by not educating and supporting people properly, and providing the necessary tools (strips), GPs end up costing the NHS far, far more money in the cost of treating avoidable complications. 80% of the NHS diabetes 'bill' goes on the treatment of complications arising from poor control - and 80% of those are thought to be avoidable. The actual money spent on test strips is relatively insignificant when put alongside the costs of complications and increased medication costs - it is a false economy to restrict them and the savings are only very short-term and trivial. People with Type 2 who learn how to tailor their diet through BG monitoring do not need to test with high frequency once they have established what works well for them, so the notion that prescribing strips is a perpetual drain is also incorrect. As stated, not everyone can afford to fund themselves, but the whole logic of NOT providing strips on prescription to anyone wishing to self-monitor is flawed :(
 
Northerner said:
logic of NOT providing strips on prescription to anyone wishing to self-monitor is flawed :(
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Agreed 100%..... I do test daily for my FBG but unless I've fallen off the wagon or trying something new I don't bother to test after eating. Latest A1c is 5.5% (as of last week) so I think I'm under control & that control is achieved because I have the ability to test.
 
In an ideal world, we'd all be able to test as needed, but since this isn't an ideal world I'm of the opinion that T2s need to test, at least in the first year as they learn how to manage their condition. After that it may not be as vital, so long as they can test from time to time, or if they feel something is wrong. There are cheaper options out there for meters/strips, the SD Codefree that we suggest to newbies who are refused the gear is one option.

I do appreciate the struggle though, it was the same for me before I was re-dx'd as Doctor Idiot refused me as well and I ended up buying my own strips off eBay. Which gave me fits in a moral sense as they may well have been resold by someone who wasn't using theirs. Beggars and choosers though, I did it because testing was essential for me and indeed, helped me prove my point about the treatments I was given - they didn't work well at all because of course I'm not actually T2, despite the doctor's assumptions.
 
When I was first mis-diagnosed as type 2 20 years ago, I was supplied with a a meter and test strips, which is how it was discovered fairly quickly that I was type 1. Maybe Northerner can help me out here, but that makes me think that this restriction on type 2s is of relatively recent introduction, (or at least within the last 20 years) and driven by economic consideration rather than medical. I agree with Alison, in the first year of a type 2 diagnosis, meters and strips should freely available, if only to spare those such as Alison or myself being misdiagnosed, and perhaps limited when a Type 2 condition is stable to use in intercurrent illness or other crisis.
 
Interesting to note that here, in the States, I have no co-pay on my test strips (lancets I have to pay 100%, go figure, but almost 18mo in I still have a lifetimes supply!!!!).... I think that the insurance companies are more than willing to spend money up-front for preventative measures than pay down-stream due to complications. This also extends to blood screenings every 3 months.
It took me many years & a DX of Type 2 to actually really get preventative medicine as my culture was one of see the Dr. if you are unwell.
 
@Dizzy58, I'm getting PIP and it's not easy to do, but the main secret to it is to involve the CAB at the earliest opportunity and, when filling in the forms (also at the interview), describe your worst day. Don't over explain yourself, just state your worst case scenario and also try to take someone with you to the assessment. I found a site call YoureAble which has a wonderful forum full of useful information and support. It's part of the Shaw Trust which specialises in helping 'disabled' people with issues around health, work and benefits.
 
Hannah DUK said:
Absolutley - we would like to get some input during the planning process for the 2017 events so I will keep you updated. I will also come back to you in the next few days with some feedback from the adult event last month. 🙂
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Hi Hannah

Just following up your earlier promise.
Any news on the planning for 2017?
Any feedback from the adult events this year?
 
Which of these would people pick as having the most effect on BG
Multi grain hoops
ingredients: wholegrain flowers 79%, sugar, wheat start, invert sugar syrup, colours, caramel sugar syrup...
Carboydrate per 100g 75g
or
bitesize Wheat Shreds (Aldi Shredded Wheat)
Ingredients: whole grain weat 100%
Carboydrate per 100g 65g

I tested having both of these. My BG was the same for both. Only self testing will tell us that.
 
🙂
SB2015 said:
Hi Hannah

Just following up your earlier promise.
Any news on the planning for 2017?
Any feedback from the adult events this year?
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Sorry for the delay - I have recieved the evaluation from our Adult Event, held earlier this year - but it is a PDF document and I do not know how to upload it? perhaps @Northerner can help? If not, i would be happy to email it to you 🙂

I can confirm that there will be two further adult events in November 2016, in Manchester and Peterborough, and we will be feeding a lot of the comments from the evaluation into our planning to help improve these events and ensure that attendees get the most out of them. These two events will help towards testing the design and content of the days and will feed into the planning for 2017. It is a big learning curve but hopefully, the events will continue to improve as we recieve more and more feedback.

Our Events Team have now submitted their 2017 plans and - pending final approval - hope to put on four adult events (18+ - no upper age limit) next year. The dates and locations are not set yet but it’s likely they'll be heading for large centres of population with a good geographical spread (so for example they could be looking at picking from cities such as London, Birmingham, Manchester, Nottingham, Newcastle, Bristol, Glasgow, Edinburgh, Leeds and so on). We are all really excited to have this opportunity to expand Diabetes UK events to a wider audience and hope that many people will have the chance to benefit from them.🙂
 
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