-
Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
-
Learn more about joining the Diabetes UK Support Forum team here: https://forum.diabetes.org.uk/boards/threads/volunteering-opportunities-why-dont-you-join-us.112862/
Disability Living Allowance....
- Thread starter sasha1
- Start date
- Status
Hi allanfnorman,
I feel for you hun....this system is a nightmare..
At the moment I am waiting to see if the decision can be over turned in house by another department..although an official appeal has be lodged..On friday I received a letter from the DLA....containing 124 pages of information regarding my claim for Nathan...Most of this was all the information that I had submitted...and a reason for there decision...from what I can see by 2 paragraphs by some doctor who's writing is illegiable...although his final sentence is ...I would suggest reassesment when he is 16 years old he should be able to cope with more responsibility by then..... the paragraph the DLA have used is as follows....It is accepted that nathan can need some attention/supervision at night, but he is aware of his condition and if his blood is tested before going to bed it will give an indication of his current health/risk........mmmmmmmm...as if....they have not a clue, but what follows is a classic line.......sugary snacks can be left at the bedside for use as necessary.....thats if nathan can actually open them or anything else in hypo state.....it is not considered that he needs repeated attention or someone to be awake to watch over him most nights of the week in order to prevent the risk of serious harm/danger........and in any case all children need some supervision at night....
Like you I'm going to fight and continue with this appeal...I will stand at that hearing representing Nathan...and will have my day with these people...and say what I have got to.......you are all so wrong on every level of this judgement...Fair enough I may not win or get the decision over turned..but I must try and give it my best shot....
Good Luck...will keep you all posted on this
Heidi
🙂
I know I'm going to incur lots of people's wrath with this but, in playing devil's advocate, in what way does this DLA actually help a diebetic? Isn't it just some extra cash? It doesn't help overcome night hypos or improve BGs nor is it enough to allow a parent to give up work and care full time.
In this day and age when Diabetics are trying to persue normal lives and not feel disabled doesn't DLA move us another step towards being regarded as disabled rather than living with a condition? Don't we try and live as normal a life as possible? Diabetic children go to normal schools, we expect the school staff to understand their needs, for no extra money but at home we expect to get extra benefits?
OK, got my hard hat on!
In this day and age when Diabetics are trying to persue normal lives and not feel disabled doesn't DLA move us another step towards being regarded as disabled rather than living with a condition? Don't we try and live as normal a life as possible? Diabetic children go to normal schools, we expect the school staff to understand their needs, for no extra money but at home we expect to get extra benefits?
OK, got my hard hat on!
Hi Amanda....
I accept your opinion....although I do not agree with it
Some of the points you raise are valid and I accept that....no amount of money is going to stop night time hypos etc or take diabetes away from children/adults....I would give every last penny I have to ensure this.
Yes it is extra money......to which they are entitled...there are more people out there claiming money for which they are not entitled......diabetic children are....in fact while we on that subject how many people get handouts from our country..when they shouldnt even be here in the first place...no one says anything about that... not politically correct...
Can I ask how old you are...and how old you were when you were diagnosed?
As for my circumstances..yes I'm a single parent...yes I dont work for other reasons..which I dont feel the need I have to go into...some parents have no option to give up work when a child is diagnosed...because school cannot cater for the requirements of diabetic children....will not take responsibility for there care etc.....do you expect a 4 year old to be able to manage her diabetes on her/his own....my own experience of Nathan's school in one word SHAM....in the understanding of diabetes....If I was not on call through out the school day to help Nathan.
In my earlier post I said all diabetics should be awarded DLA regardless of age and type...if not to help with the rising food costs....etc
Yes I want Nathan to persue a 'Normal Life'......but on the other hand he has this terrible potentially life threatening condition.......has to take 4 injections a day...check blood etc etc.......before food can pass his mouth...than I'm sorry but in the big scheme of things he is at a disadvantage....
Heidi
🙂
Hi Amanda,
The reason parents/carers are entitled to claim disability living allowance is because they are carers.
Because we have to make checks at random times throughout the night on occasion - this makes it near impossible to be employable - due to the fact that we are on call 24 hours a day. What employer wants to employ someone who may need to leave at a moments notice? Who wants to employ someone who is obviously tired through night time checking and incapable of doing a good days work?
The carers allowance we are entitled to is supposed to be the equivalent of how much it would cost to employ a nurse to do the night time checks etc.
This comes to the hefty amount of 53 pence per hour approx. I am certain that if this job were advertised there would be no takers!
All this is made even harder on carers due to the fact that we arent paying into a pension so therefore are facing a financial loss in the future until such time as our children are old enough to care for themselves.
Your absolutely right - the money does not take away hypos etc or make their lives any easier to deal with as regards diabetes and its complications, but it does go some way to helping with extra costs that we occur as a direct result of having a diabetic child. Food being a big part of this, since diagnosis our food bill has gone up by about one quarter - simply due to the fact that we try to buy the healthier cuts of meat and fish and now we HAVE to buy hypo treatments (rarely bought sweets or biscuits before this) whether we want to or not.
There are also other costs that we have as a direct result of having a diabetic child, like if my son is feeling ill whilst we are out and just wants to get home - a taxi doesnt come cheap (if we dont have the car that day) or free. We have bought various extra sporting items to encourage doing extra exercise as we all know that exercise helps long term and helps reduce high levels etc.
Also, there are occasions when my son isnt able to join in the fun because his levels are either far too low or far too high - so we take the view that a trip to the cinema will help him to feel like he is having fun aswell - the cinema isnt cheap either. A child without diabetes can join in anything at any time - but a diabetic child often has to watch from the sidelines.
I have to do extra washing when his levels are too high through the night due to growth hormones - he wets the bed sometimes because of high levels, and this incurs extra sets of bedding etc and washing powder. This wouldnt happen if he wasnt diabetic.
Diabetes within a family setting doesnt just affect the child - it affects the whole family and incurs many extra costs that we wouldnt have had if our children were not diabetic.
There are more examples i could give you - but i think i have covered enough here.
What i would add to the above is that if someone offered to swop my 53 pence an hour for a little boy who didnt have diabetes - then i would gladly make the swop!
Both myself and my sons father have worked full time for a total of appox 50 years between us , so i think we have paid enough into the benefits system to warrant our 53 pence per hour.
If your views on claiming disability living allowance is the same across the board, it would seem that there is no reason to allow a blind person any benefit because it will not improve their eyesight. Or a paraplegic - because it will not make them walk. Or anybody else with a chronic medical condition - because money wont make them better. And thats the point! It isnt there to make them better - its there to ease their daily lives - because their lives are infinateley more difficult with their disabilities than that of their peers.
Just because people cant 'see' diabetes - doesnt mean its not a disability.
Bev
p.s. Perhaps teachers should claim more money for helping a child from going into a coma - but that is up to them to deal with - us parents and carers have enough stress dealing with diabetes.
Last edited:
Please click one of the Quick Reply icons in the posts above to activate Quick Reply.
Hi Bev....
Thank you for your post on this....You said exactly what I should have also said....but at the time could'nt think of it all
Parents who work can also claim carers allowance as well as DLA....contact DSS or DLA for a claim form if needed
Heidi
Hi Bev....
Thank you for your post on this....You said exactly what I should have also said....but at the time could'nt think of it all
Parents who work can also claim carers allowance as well as DLA....contact DSS or DLA for a claim form if needed
Heidi
Adrienne
Well-Known Member
- Relationship to Diabetes
- Parent
Well I agree with all of that !!! Well said people.
On a personal note I don't expect the school to care for my daughter for free. Infact the PCT pay for a one to one carer for her at school. The school have just applied for a statement. The difference these days from a few years ago for children is the newer regimes ie BB or pumping requires even more intervention than a few years ago. With BB and pumping you can achieve much better numbers and with this tighter window and better numbers comes the potential for more hypos but also carb counting and extra testing and to know what to do with those numbers.
A few years ago it was two injections a day of mixes and a few finger tests, before that there were not even finger tests and a lot of it was done on whether you feel hypo, my daughter never feels a hypo or a hypo and does not look different when either as well so needs lots of tests.
The regimes years ago have the potential to knock of 23 years on average of life. To stop this awful life expectancy and to have better care on a day to day basis you have to work extra hard at it and parents these days pretty much give up their lives so their children can live as normal a life as possible.
I can't work. I'm a single parent, not through choice originally. Luckily I have worked for my dad for 21 years and they send me work over the net and I can do it in the evenings or when I haven't been called into school. I don't choose not to work, I would choose to work, I enjoyed my job, infact I loved it but I have no choice these days. I could not survive without DLA.
Don't worry Amanda, I don't think anyone will have a go at you. You have made valid points and we have heard them before from other people, wherever I go actually.
On a personal note I don't expect the school to care for my daughter for free. Infact the PCT pay for a one to one carer for her at school. The school have just applied for a statement. The difference these days from a few years ago for children is the newer regimes ie BB or pumping requires even more intervention than a few years ago. With BB and pumping you can achieve much better numbers and with this tighter window and better numbers comes the potential for more hypos but also carb counting and extra testing and to know what to do with those numbers.
A few years ago it was two injections a day of mixes and a few finger tests, before that there were not even finger tests and a lot of it was done on whether you feel hypo, my daughter never feels a hypo or a hypo and does not look different when either as well so needs lots of tests.
The regimes years ago have the potential to knock of 23 years on average of life. To stop this awful life expectancy and to have better care on a day to day basis you have to work extra hard at it and parents these days pretty much give up their lives so their children can live as normal a life as possible.
I can't work. I'm a single parent, not through choice originally. Luckily I have worked for my dad for 21 years and they send me work over the net and I can do it in the evenings or when I haven't been called into school. I don't choose not to work, I would choose to work, I enjoyed my job, infact I loved it but I have no choice these days. I could not survive without DLA.
Don't worry Amanda, I don't think anyone will have a go at you. You have made valid points and we have heard them before from other people, wherever I go actually.
Adrienne
Well-Known Member
- Relationship to Diabetes
- Parent
I can't claim carers allowance because I 'earn' too much. If I was on income support I could but because I earn and get DLA and get tax credits because I refuse to stop working they say I am too rich !!!! Love it. Would like them to live my life for a week.
runner
Well-Known Member
- Relationship to Diabetes
- Type 1.5 LADA
As a civilised society (well we live in hope!) and as social beings, I feel we all have a collective responsibility towards children and those who cannot, through no fault of their own, support themselves, and that's why we have DLA and other benefits. I would rather my taxes went on these than some of the other places they go. Children are the future and will be looking after us directly or indirectly as we get older. I'm sure Nathan and Alex will be doing their bit later on!
Last edited:
Hi Runner,
Thank you for your reply....your words like the others mean a great deal to me...I can also assure you that Nathan will be doing his bit later on in his career life and beyond...he will put back what he is rightfully entitled to and more
Hope you are well
Heidi
Adrienne
Well-Known Member
- Relationship to Diabetes
- Parent
Runner, that is lovely what you said and I agree wholeheartedly.
However if you would like to stop paying tax and pay me directly then that would be most appreciated. 🙂 🙂 All donations greatly received.
Actually do you know what hasn't been mentioned by anyone, I don't think. I have always worked full time until I was 31 from 16. I have paid tax and NI for all those years. I never claimed anything at all and working in a criminal solicitors I saw plenty of benefit fraud with these people who think they were 'owed' by us workers.
When Jessica was born and we were living in a charity house next door to Great Ormond Street, my maternity pay came to an end. I was single and her father was paying me nothing at this point, last thing on our minds quite frankly. I still had a mortgage to pay and bills to pay for my house but had no income. I was sent to the hospital social worker and she told me I was too rich to help !!! and too poor to survive. Terrific. My dad paid my mortgage for months until I was able to get back on my feet and work. My work had changed obviously and I had to work from home whenever I had a chance as well as looking after a very sick baby.
You cannot claim DLA until a child is 3 months old I think or is it 6 months. Anyway I claimed as I was told to. It was refused so I appealed and 18 months later I went to tribunal with my dad for courage, my sick baby because no-one else was trained to look after her and back then things were very very dodgy and my mum to watch my daughter whilst I was in the tribunal. They panel were absolutely horrified that I was there and had the form filled in already. The doctor on the panel could not believe what I was doing and how I was dealing with it yet working as well. They back dated it fully for 18 months and I managed to get a hall and stairs carpet so my daughter didn't have to crawl on concrete floor anymore.
They have no idea, these DLA people, what its like. There is still no provision for people who were in my position. I was lucky, my dad paid my mortgage but others would have lost their homes !!
However if you would like to stop paying tax and pay me directly then that would be most appreciated. 🙂 🙂 All donations greatly received.
Actually do you know what hasn't been mentioned by anyone, I don't think. I have always worked full time until I was 31 from 16. I have paid tax and NI for all those years. I never claimed anything at all and working in a criminal solicitors I saw plenty of benefit fraud with these people who think they were 'owed' by us workers.
When Jessica was born and we were living in a charity house next door to Great Ormond Street, my maternity pay came to an end. I was single and her father was paying me nothing at this point, last thing on our minds quite frankly. I still had a mortgage to pay and bills to pay for my house but had no income. I was sent to the hospital social worker and she told me I was too rich to help !!! and too poor to survive. Terrific. My dad paid my mortgage for months until I was able to get back on my feet and work. My work had changed obviously and I had to work from home whenever I had a chance as well as looking after a very sick baby.
You cannot claim DLA until a child is 3 months old I think or is it 6 months. Anyway I claimed as I was told to. It was refused so I appealed and 18 months later I went to tribunal with my dad for courage, my sick baby because no-one else was trained to look after her and back then things were very very dodgy and my mum to watch my daughter whilst I was in the tribunal. They panel were absolutely horrified that I was there and had the form filled in already. The doctor on the panel could not believe what I was doing and how I was dealing with it yet working as well. They back dated it fully for 18 months and I managed to get a hall and stairs carpet so my daughter didn't have to crawl on concrete floor anymore.
They have no idea, these DLA people, what its like. There is still no provision for people who were in my position. I was lucky, my dad paid my mortgage but others would have lost their homes !!
Hi Adrienne,
I know exactly where you are coming from on this..
I too worked up until I had Nathan...than because of me having a nervous breakdown..as a result of PND and the subsequent breakdown of my marriage 9 years ago..have since been on my own...living basically hand to mouth...Nathan's dad is about as much use and support to him as a chocolate fireguard..has not the slightest idea of how to cope or understand Nathans diabetes...in fact the last time his dad saw Nathan was the 12 april for 2 hrs...
Benefit fraud is rife and in someways open to abuse, therefore penalising the genuine among us...DLA can be claimed once the child has had diabetes for 3 months....to see if there has been any change...Hello but as far as I am aware you dont get over it...its not a cold
I live in a privately rented house...that is mine and Nathan's home...When I need a council house....I was'nt entitled to one...hello I was effectively homeless at the time...I have lived here know for 9 years...its cosy...we don't have brand new furniture and mod cons, go on holidays, run a car etc...but what we have to me is priceless...and more than some..Nathan is loved, cared for, clean, has clothes on his back and well fed..
DLA people have no understanding of diabetes, care, management etc...I personally intend to try to change there view on this...not just from my side...but for other parents who find thereselves in our position. At the end of the day no parent should have to fight the system for the rights of our children in getting what they are entitled to legitamately..but fight is what I fully intend to do
Heidi
I know exactly where you are coming from on this..
I too worked up until I had Nathan...than because of me having a nervous breakdown..as a result of PND and the subsequent breakdown of my marriage 9 years ago..have since been on my own...living basically hand to mouth...Nathan's dad is about as much use and support to him as a chocolate fireguard..has not the slightest idea of how to cope or understand Nathans diabetes...in fact the last time his dad saw Nathan was the 12 april for 2 hrs...
Benefit fraud is rife and in someways open to abuse, therefore penalising the genuine among us...DLA can be claimed once the child has had diabetes for 3 months....to see if there has been any change...Hello but as far as I am aware you dont get over it...its not a cold
I live in a privately rented house...that is mine and Nathan's home...When I need a council house....I was'nt entitled to one...hello I was effectively homeless at the time...I have lived here know for 9 years...its cosy...we don't have brand new furniture and mod cons, go on holidays, run a car etc...but what we have to me is priceless...and more than some..Nathan is loved, cared for, clean, has clothes on his back and well fed..
DLA people have no understanding of diabetes, care, management etc...I personally intend to try to change there view on this...not just from my side...but for other parents who find thereselves in our position. At the end of the day no parent should have to fight the system for the rights of our children in getting what they are entitled to legitamately..but fight is what I fully intend to do
Heidi
insulinaddict09
Well-Known Member
- Relationship to Diabetes
- Type 1
Without entering in to another major debate can i just second heidi in this , also well said bev!!!!! I totally agree with everything you have both said
Amanda, I have noticed on your profile that you are in the teaching profession. I would be interested to know whether you would be prepared to treat a type 1 diabetic child if he/she needed it? Is money really an issue if your first duty is to provide a 'duty of care'?
I only ask as i personally find it confusing that someone who is herself a type 1 and is therefore in the perfect position to understand the requirements of a diabetic child - would question the salary that is being paid.
As you will know, there is no protocol within schools regarding the treatment/care of children with diabetes. This is something that is being looked into - and hopefully things will improve for our children, so that they can be educated in a safe environment - in the knowledge that they will get emergency help as and when required - and not whether the teacher is being paid enough money. Is it down to lack of training? Some schools seem very interested in receiving training - but others are just a closed book and have no interest in even trying. This cannot be right for our children.
What upsets me the most about a lack of protocol within schools is that if you saw a stranger on the street mid-hypo you would probably help out without even a second thought, and yet there are children sitting in schools who are denied even the most basic of care and help - even though the dangers are quite apparent and can lead to coma or worse.
It really is a puzzle to me.Bev
I only ask as i personally find it confusing that someone who is herself a type 1 and is therefore in the perfect position to understand the requirements of a diabetic child - would question the salary that is being paid.
As you will know, there is no protocol within schools regarding the treatment/care of children with diabetes. This is something that is being looked into - and hopefully things will improve for our children, so that they can be educated in a safe environment - in the knowledge that they will get emergency help as and when required - and not whether the teacher is being paid enough money. Is it down to lack of training? Some schools seem very interested in receiving training - but others are just a closed book and have no interest in even trying. This cannot be right for our children.
What upsets me the most about a lack of protocol within schools is that if you saw a stranger on the street mid-hypo you would probably help out without even a second thought, and yet there are children sitting in schools who are denied even the most basic of care and help - even though the dangers are quite apparent and can lead to coma or worse.
It really is a puzzle to me.
BevAs some will be aware I was a fairly active member before, as I perceived it, anti Irish 'jokes' appeared on this site. Up to this point I was content to watch the forum and read the various advices but not contribute. I now break my silence once for this thread.
I am a tribunal member and have long experiences of the appeal process. In my experience, tribunals really do bring the worst out in people. I once had a parent send one of my teachers back a Christmas school report with the footnote that it "would compromise my DLA - make it sound worse". Honest.
I did attempt to get folk in this forum help rewrite SEN legislation here in Northern Ireland a number of months ago and no one assisted me. So the opportunity passed never to be repeated. I did try but mine was one voice e.g. Mencap made 786 submissions diabetic related submissions were counted in single figs.
Bev, there are some very excellent examples of diabetic related protocols in schools - I have seen them. I think you are referring to the lack of national protocols (regulations).
Its a sad fact that folk look after their own interests but fail to come together to help each other. Rather that going to tribunal to have a fight - join together and change the rules the DLAs work under. No one in a DLA is keeping cash from parents as part of an evil plan - they are applying the DLA rules as they currently are. If you think they are 'wrong' then have the rules changed. But folk must join together.
I am with Amanda and I welcome her input. Folk need to stop playing the emotive card. FACTS are needed - and they are non emotive and are stone cold.
To say that DLA staff have no idea about diabetes means that a lot of work needs to be done - but I see no major attempt to educate.
Ceara
I am a tribunal member and have long experiences of the appeal process. In my experience, tribunals really do bring the worst out in people. I once had a parent send one of my teachers back a Christmas school report with the footnote that it "would compromise my DLA - make it sound worse". Honest.
I did attempt to get folk in this forum help rewrite SEN legislation here in Northern Ireland a number of months ago and no one assisted me. So the opportunity passed never to be repeated. I did try but mine was one voice e.g. Mencap made 786 submissions diabetic related submissions were counted in single figs.
Bev, there are some very excellent examples of diabetic related protocols in schools - I have seen them. I think you are referring to the lack of national protocols (regulations).
Its a sad fact that folk look after their own interests but fail to come together to help each other. Rather that going to tribunal to have a fight - join together and change the rules the DLAs work under. No one in a DLA is keeping cash from parents as part of an evil plan - they are applying the DLA rules as they currently are. If you think they are 'wrong' then have the rules changed. But folk must join together.
I am with Amanda and I welcome her input. Folk need to stop playing the emotive card. FACTS are needed - and they are non emotive and are stone cold.
To say that DLA staff have no idea about diabetes means that a lot of work needs to be done - but I see no major attempt to educate.
Ceara
Hi Ceara,
I do remember you asking for stories/help for your campaign - but as i recall you were asking for stories from families in Ireland? I may have missunderstood you at the time - but i would happily have put my name to anything if it meant getting some better care for our children in schools. Sorry if i missunderstood!
I dont think anyone is using the emotive card regarding the DLA - Amanda was asking why diabetics should claim for DLA (or rather their parents) and i have explained my views on the need for DLA so wont bore you with another version!
The 'problem' that a lot of parents face is that there just arent any legal requirements for schools to offer any help to diabetic children at the moment.
It is all done using school care plans and only if the school can be bothered. This just isnt right and we are hoping that this will change.( i do accept that some schools are brilliant at looking after diabetic children).
This was not a personal attack on Amanda at all - i was just interested to hear it from the point of view of a teacher and a diabetic - so seeing it from both sides as it were!
Nice to hear from you anyway, hope your feeling well and still campaigning!🙂Bev
Adrienne
Well-Known Member
- Relationship to Diabetes
- Parent
Hi Ceara
Well that's a stirling job you do and I imagine you do take some stick as you say. I also welcome Amanda's input. She put her hard hat on, as she said, but she also said she was playing devil's advocate which is fair enough as well.
"Its a sad fact that folk look after their own interests but fail to come together to help each other. Rather that going to tribunal to have a fight - join together and change the rules the DLAs work under. No one in a DLA is keeping cash from parents as part of an evil plan - they are applying the DLA rules as they currently are. If you think they are 'wrong' then have the rules changed. But folk must join together."
I think you are unaware of what is going on around the country in general where diabetes is concerned. It was a small (about 5) group of mums (myself included) who joined together to get the wording of the change4life campaign altered. I asked on this forum and was inundated with help and from the people with type 2 as well as 1.
I am part of the UK Children with Diabetes Advocacy Group. There is a group of us with a lot of members as well who campaign tirelessly and work WITH DUK and JDRF and INPUT to change things and make life better. We have found the DUK are quite selfish and take the credit for stuff that they don't do. We have fought back on that and they now seem to be behaving themselves. We need to get the leaflets updated. Schools are approached by DUK or approach them as the biggest diabetes charity. The leaflets are very wishy washy and believe me we have tried to get them changed. The latest folder that DUK have produced for schools but only if the schools reply to one email to say they want one, is inadequate. They did not ask the right people for advice. I have numerous friends travelling where they can and when they can, their children with diabetes come first though, all over the UK. They are asked to give speeches by DUK and others and some meet with people from all the companies, I've been to one myself recently and we are trying to get things changed. It is extremely hard.
However as well as pulling together to get things changed you also have to make sure your family is ok as well especially your child with diabetes who relies on you 100% to make them safe and have a good fun childhood with a disease that could kill them !!!!!!
I have a meeting with the local PCT soon, with the Head of Paediatrics to try and change the way children with diabetes are dealt with and cared for in East Sussex. I have cancelled Wednesdays meeting as INPUT have said they would like to come with me, we have pulled together and we are rearranging the meeting.
Now you may think that we all think of ourselves but let me tell you, before you spout off like you did (sorry but I'm getting a teensy bit cross now) that I don't need to get the care changed where I live. My daughter goes to a fab hospital in London, I don't care what the state of the care is locally or rather I don't have to care, but I do. I know what good care should be like so I will strive to get it locally for the other people. I also don't need to bother with the Chessington thing. My daughter has a blue badge and does not have normal diabetes, she has another condition which has made her diabetes so she qualifies automatically for an exit pass. But that hasn't stopped me from helping others and I'll carry on helping others.
Please don't judge just what you read. Find out more about these people first.
I've met Bev and I have spoken to her lots of times now. Her son is not even a year into diagnosis. She has learnt so much and she has learnt horrible things about diabetes that no mother should ever have to learn. She is an amazing lady so don't judge her on a posting. If it comes to a 'fight' against Chessington or like the Change4life then Bev will be there without a shadow of a doubt.
Please ask before accusing, that's just not fair.
Well that's a stirling job you do and I imagine you do take some stick as you say. I also welcome Amanda's input. She put her hard hat on, as she said, but she also said she was playing devil's advocate which is fair enough as well.
"Its a sad fact that folk look after their own interests but fail to come together to help each other. Rather that going to tribunal to have a fight - join together and change the rules the DLAs work under. No one in a DLA is keeping cash from parents as part of an evil plan - they are applying the DLA rules as they currently are. If you think they are 'wrong' then have the rules changed. But folk must join together."
I think you are unaware of what is going on around the country in general where diabetes is concerned. It was a small (about 5) group of mums (myself included) who joined together to get the wording of the change4life campaign altered. I asked on this forum and was inundated with help and from the people with type 2 as well as 1.
I am part of the UK Children with Diabetes Advocacy Group. There is a group of us with a lot of members as well who campaign tirelessly and work WITH DUK and JDRF and INPUT to change things and make life better. We have found the DUK are quite selfish and take the credit for stuff that they don't do. We have fought back on that and they now seem to be behaving themselves. We need to get the leaflets updated. Schools are approached by DUK or approach them as the biggest diabetes charity. The leaflets are very wishy washy and believe me we have tried to get them changed. The latest folder that DUK have produced for schools but only if the schools reply to one email to say they want one, is inadequate. They did not ask the right people for advice. I have numerous friends travelling where they can and when they can, their children with diabetes come first though, all over the UK. They are asked to give speeches by DUK and others and some meet with people from all the companies, I've been to one myself recently and we are trying to get things changed. It is extremely hard.
However as well as pulling together to get things changed you also have to make sure your family is ok as well especially your child with diabetes who relies on you 100% to make them safe and have a good fun childhood with a disease that could kill them !!!!!!
I have a meeting with the local PCT soon, with the Head of Paediatrics to try and change the way children with diabetes are dealt with and cared for in East Sussex. I have cancelled Wednesdays meeting as INPUT have said they would like to come with me, we have pulled together and we are rearranging the meeting.
Now you may think that we all think of ourselves but let me tell you, before you spout off like you did (sorry but I'm getting a teensy bit cross now) that I don't need to get the care changed where I live. My daughter goes to a fab hospital in London, I don't care what the state of the care is locally or rather I don't have to care, but I do. I know what good care should be like so I will strive to get it locally for the other people. I also don't need to bother with the Chessington thing. My daughter has a blue badge and does not have normal diabetes, she has another condition which has made her diabetes so she qualifies automatically for an exit pass. But that hasn't stopped me from helping others and I'll carry on helping others.
Please don't judge just what you read. Find out more about these people first.
I've met Bev and I have spoken to her lots of times now. Her son is not even a year into diagnosis. She has learnt so much and she has learnt horrible things about diabetes that no mother should ever have to learn. She is an amazing lady so don't judge her on a posting. If it comes to a 'fight' against Chessington or like the Change4life then Bev will be there without a shadow of a doubt.
Please ask before accusing, that's just not fair.
Hi Ceara....
Firstly can I say I have never been involved in any anti irish jokes....or any others that may be aimed at people that have different cultures, religion, belief, colour etc..
I am actually having to take my time replying to your post...as I am feeling rather angry...that you seem to have judged people quickly...firstly what gives you the right to do so...
I am a parent of one child...who is type 1...aged 14 diagnosed feb 07...he had 11 nearly 12 years...of living sorry to say this a 'Normal life' that did'nt involve taking injections, blood test, watching what he ate and when he ate it, having hypo's/hyper's....feeling outcast and isolated by this so called human society....
Just a second....how dare one say to a mother/father that they are using an emotive card...just how narrow minded are you....while I accept some may use this...you cannot make an assumption and tar everyone with the same brush....I deal in facts...and the hard ones at that....how can you say appeals bring the worst out in people...do you know me, bev, adrienne...I would not wish diabetes on anyone...and would give every last penny I have to rid Nathan of this chronic potentially life threatening condition....
I would help anyone at anytime of the day regardless of what they needed...I have given my phone number out to a few people on this forum...and told them what ever time of day to phone if they need me or I can help in anyway...I certainly do not look after my own interests...yet another judgement..
As I stated in an earlier post if me appealing helps at least one other parent in this situation and changes how the DLA view diabetes...then I have acheived something..I am trying to educate..and doing all I can...
Dont even get me started on schools in my area...or in fact the one Nathan attends......the list of failings goes on and on....but again I am trying to educate them for Nathan and the others who are/will be going to his school with diabetes....I fact I single handidly addressed school on letting the children have a 4 weekly private visist/group session with there DSN...it took time but school finally agreed and this has been a regular event for nearly the past year....
Heidi
🙂
Adrienne
Well-Known Member
- Relationship to Diabetes
- Parent
Emotive
The emotive thing has had me thinking long and hard.
I sit at my computer day and night in between working and acting as carer at school helping other people with diabetes, either on here or the even more active email group of over 300 parents of children with diabetes.
When I am helping those people I am not really emotional about my own child, I'm helping others with their emotions and also assisting with regimes, carb counting etc etc.
I do however concur that I get very emotional every so often about my daughter and her condition. I ignored the part of Ceara's post about emotive to begin with and addressed the rest but have now decided not to. I nearly lost my daughter 1 February 2008. I actually nearly lost her for the first 5 weeks of her life on a daily basis. I had to watch a blood clot hanging on to the end of a hickman line (inside her) go in and out of her heart cavity on a daily basis through an echo and knowing if it dropped off that would be it, bye bye. Feb 2008 at 11 pm it was by pure chance that I went into her bedroom as I took the ironing upstairs to put away that I saved my daughter's life. I had checked her at 10 pm and she was high ish about 10.0 odd so wasn't going to check again until midnight.
I found her foaming white at the mouth, not making a sound, with her arms and legs in very weird positions. I tested her and she was 1.7. I tried coke but she wasn't having it. I got the glucagon, one of which I now keep upstairs and I injected it in her leg. I ripped her pj's off to give it. I have never been trained to give it but instinct kicked in. By this time she was howling like I have never heard from a human being before. It was the sound of a wounded animal. I could do no more than just wait. The glucagon kicked in after about 5 minutes and within hours she was in then 24.0. You then have to be careful about correcting as hypos breed hypos and you cannot give glucagon again until the liver replenishes which is minimum of 24 hours but totally 48 hours. She was a bridesmaid the next day. I had a 4 hour drive to get her there and I had been awake all night. She floated down that aisle with a reading of 27.0. Believe me I was giving insulin but she just wasn't coming down, she was up and down all over the place. I should have rung an ambulance but I knew she would have been devastated not to have been a bridesmaid.
So yes I'm emotional and I have every right to be emotional. It is a totally different thing if you are a parent of a child with diabetes than if you have diabetes yourself. The feelings have to be so very different.
I don't use emotions to get money though. I do however believe that my daughter should live as normal life as possible like her friends and that can and does take money that I do not have as I cannot work full time and if I didn't work for my dad then I would not even be able to work part time.
FYI I have never made any anti Irish jokes on this forum, I have actually no clue as to where most people come from.
The emotive thing has had me thinking long and hard.
I sit at my computer day and night in between working and acting as carer at school helping other people with diabetes, either on here or the even more active email group of over 300 parents of children with diabetes.
When I am helping those people I am not really emotional about my own child, I'm helping others with their emotions and also assisting with regimes, carb counting etc etc.
I do however concur that I get very emotional every so often about my daughter and her condition. I ignored the part of Ceara's post about emotive to begin with and addressed the rest but have now decided not to. I nearly lost my daughter 1 February 2008. I actually nearly lost her for the first 5 weeks of her life on a daily basis. I had to watch a blood clot hanging on to the end of a hickman line (inside her) go in and out of her heart cavity on a daily basis through an echo and knowing if it dropped off that would be it, bye bye. Feb 2008 at 11 pm it was by pure chance that I went into her bedroom as I took the ironing upstairs to put away that I saved my daughter's life. I had checked her at 10 pm and she was high ish about 10.0 odd so wasn't going to check again until midnight.
I found her foaming white at the mouth, not making a sound, with her arms and legs in very weird positions. I tested her and she was 1.7. I tried coke but she wasn't having it. I got the glucagon, one of which I now keep upstairs and I injected it in her leg. I ripped her pj's off to give it. I have never been trained to give it but instinct kicked in. By this time she was howling like I have never heard from a human being before. It was the sound of a wounded animal. I could do no more than just wait. The glucagon kicked in after about 5 minutes and within hours she was in then 24.0. You then have to be careful about correcting as hypos breed hypos and you cannot give glucagon again until the liver replenishes which is minimum of 24 hours but totally 48 hours. She was a bridesmaid the next day. I had a 4 hour drive to get her there and I had been awake all night. She floated down that aisle with a reading of 27.0. Believe me I was giving insulin but she just wasn't coming down, she was up and down all over the place. I should have rung an ambulance but I knew she would have been devastated not to have been a bridesmaid.
So yes I'm emotional and I have every right to be emotional. It is a totally different thing if you are a parent of a child with diabetes than if you have diabetes yourself. The feelings have to be so very different.
I don't use emotions to get money though. I do however believe that my daughter should live as normal life as possible like her friends and that can and does take money that I do not have as I cannot work full time and if I didn't work for my dad then I would not even be able to work part time.
FYI I have never made any anti Irish jokes on this forum, I have actually no clue as to where most people come from.
- Status