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Refused DLA for 13 year Old.
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<blockquote data-quote="smaynard" data-source="post: 336092" data-attributes="member: 26686"><p>Hi JanieMc,</p><p></p><p>I was most interested in your post as I'm always keen to understand the perspectives of those who have lived with type 1 diabetes on how it has/does impact their lives. I'm the mother of a young child who has type 1 and I always take great comfort in hearing stories of people who have lived with the disease for many years leading full and active lives without complications.</p><p></p><p>When I read your post it struck me that this was likely the case for you too, given that you can not understand why children with type 1 should need additional care. I am very sorry and sad to understand from a post I've seen else where on the forum that this is not the reality....you suffer significant complications and had great difficulty managing your condition for the first 20 years of diagnosis. I'm so glad to hear that you have been successful in achieving stability in more recent years with the help of a pump.</p><p></p><p>I note you mention "you have never claimed a penny". The first thing to say is that I believe this post specifically refers to DLA for children and not adults....I have no experience of DLA for adults and I think that discussion would likely have different points.</p><p></p><p>DLA was introduced in 1992....so sadly was not available to children with type 1 when you were diagnosed in 1974. You mention that treatment for type 1 has greatly improved in the years since your diagnosis, I think it is worth commenting that knowledge about the implications of poor control and focus on preventing those implications has too. I have read stories of others that highlight what poor level of understanding and care was historically given to type 1 diabetics</p><p></p><p>We are without doubt aided by advancements in treatments available to assist in our battle for stability and thus offer children with type 1 the best chance of continued good health without complications in adulthood. However, please do not think that this is in anyway easy or underestimate the amount of time and effort it takes....even with pumps (and lets not forget only a small % of children in the UK are lucky enough to have those) and improved blood glucose reading methods. In my experience, maintaining tight control in my daughter is a relentless challenge which takes considerable dedication and loss of sleep over and above what normal parenting would require without her condition. </p><p></p><p>You comment you can perhaps see a cost implication for more fuel being used to pick up poorly children from school, but that's it. For my family, I don't think we incur any additional material costs in caring for our daughter's condition....we are lucky enough to have been successful in winning our battles for funding for her pump, continuous glucose monitor and indeed the dedicated care her school insisted she must have in order to attend....however, the cost to us is my time, I could not imagine how I would cope with the demands of a job on top of the care demands our daughter's condition presents. The DLA and carers allowance payments are therefore helpful to offset against missed earnings.</p><p></p><p>The good news is that I consider that my daughter most certainly benefits from the level of care I am able to provide her....in her 4 years since diagnosis she has always met the NICE guidelines of an HbA1c of less than 7.5% and for last 5 quarters her results have all been in the low 6s. She has not suffered from an episode of severe hypoglycemia and she has not suffered from ketoacidosis. I consider this good stability is in part due to the considerable advances in technology that she is fortunate enough to benefit from but is in no small way a reflection of the intensity or care she receives. </p><p></p><p>Whilst not the definitive explanation you requested, I hope this is some way explains why I consider children are entitled to be awarded DLA.</p></blockquote><p></p>
[QUOTE="smaynard, post: 336092, member: 26686"] Hi JanieMc, I was most interested in your post as I'm always keen to understand the perspectives of those who have lived with type 1 diabetes on how it has/does impact their lives. I'm the mother of a young child who has type 1 and I always take great comfort in hearing stories of people who have lived with the disease for many years leading full and active lives without complications. When I read your post it struck me that this was likely the case for you too, given that you can not understand why children with type 1 should need additional care. I am very sorry and sad to understand from a post I've seen else where on the forum that this is not the reality....you suffer significant complications and had great difficulty managing your condition for the first 20 years of diagnosis. I'm so glad to hear that you have been successful in achieving stability in more recent years with the help of a pump. I note you mention "you have never claimed a penny". The first thing to say is that I believe this post specifically refers to DLA for children and not adults....I have no experience of DLA for adults and I think that discussion would likely have different points. DLA was introduced in 1992....so sadly was not available to children with type 1 when you were diagnosed in 1974. You mention that treatment for type 1 has greatly improved in the years since your diagnosis, I think it is worth commenting that knowledge about the implications of poor control and focus on preventing those implications has too. I have read stories of others that highlight what poor level of understanding and care was historically given to type 1 diabetics We are without doubt aided by advancements in treatments available to assist in our battle for stability and thus offer children with type 1 the best chance of continued good health without complications in adulthood. However, please do not think that this is in anyway easy or underestimate the amount of time and effort it takes....even with pumps (and lets not forget only a small % of children in the UK are lucky enough to have those) and improved blood glucose reading methods. In my experience, maintaining tight control in my daughter is a relentless challenge which takes considerable dedication and loss of sleep over and above what normal parenting would require without her condition. You comment you can perhaps see a cost implication for more fuel being used to pick up poorly children from school, but that's it. For my family, I don't think we incur any additional material costs in caring for our daughter's condition....we are lucky enough to have been successful in winning our battles for funding for her pump, continuous glucose monitor and indeed the dedicated care her school insisted she must have in order to attend....however, the cost to us is my time, I could not imagine how I would cope with the demands of a job on top of the care demands our daughter's condition presents. The DLA and carers allowance payments are therefore helpful to offset against missed earnings. The good news is that I consider that my daughter most certainly benefits from the level of care I am able to provide her....in her 4 years since diagnosis she has always met the NICE guidelines of an HbA1c of less than 7.5% and for last 5 quarters her results have all been in the low 6s. She has not suffered from an episode of severe hypoglycemia and she has not suffered from ketoacidosis. I consider this good stability is in part due to the considerable advances in technology that she is fortunate enough to benefit from but is in no small way a reflection of the intensity or care she receives. Whilst not the definitive explanation you requested, I hope this is some way explains why I consider children are entitled to be awarded DLA. [/QUOTE]
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