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    • What did she actually put on the form? would be good to see what was sent to them, as likely she has outed the driver .
    • Attachments (Exhibits)   FTMDave and I have called them "Attachments" but I note Andyorch used the term "Exhibits".  I don't think it makes any difference which you use but perhaps Exhibits is more correct.  Whichever you use, make sure you use the term consistently.  (i'm going to use Attachment for now).   You use Attachments as supporting evidence for things you mention in the numbered particulars of your claim.  Might be a report from a third party or a quote from a third party.  In the relevant numbered particular of your claim you refer to the appropriate Attachment supporting that part of the claim.  eg like this "(See Attachment A)".   You can use numbers or capital letters to identify each Attachment.  I don't think it matters which but be consistent in your usage.   It helps if the Attachments are organised and incorporated into your claim in a logical sequence.  (eg A, B, C etc)   Make sure each attachment is clearly labelled "Attachment A"  etc.   If it is not immediately clear to the reader what an attachment is, put a brief description.  Eg "Quote from XXXXX Ltd to complete unfinished plastering" or whatever.  Make sure the reader can understand what each attachment is.   Ideally each Attachment will be no more than one page.  So you can make the labelling of attachments even clearer by labelling them "Attachment A  -  page 1 of 1" etc etc.   If an attachment is longer than one page you label it "Attachment A - page 1 of 2" and then "Attachment A - page 2 of 2", or whatever it is.   By doing all that you are making it easier for the judge to follow - and you want the judge on your side...   Now - what you've posted in #109 is helpful because it adds up to to £16577.  Which is good.  But if I were the judge, I'd want to know where the individual items come from.     So what you have posted in #109 should - I suggest - be your final attachment.  Let's call it "Attachment H" for now.  So at the end of your particulars of counterclaim where you say you are claiming £16577 from the defendant, you put the reference "See Attachment H".   The judge then looks at Attachment H and sees a total of £16577.  What you then need on Attachment H next to each individual item on there, is a reference to which earlier Attachment that item comes from.  eg "See Attachment C".  The judge can then look at Attachment C and understand where the item on Attachment H comes from.  By doing that rigorously and methodically for each item on Attachment H you are justifying each item and the total of £16577.  Yes?   Your schedule in #109 is OK but raises questions that need answering.  eg: spelling as spotted by Honeybee13 Grand total as spotted by Honeybee13 TBA or estimates as per my previous post and Honeybee why is it in two separate sections (£8577 and £8000)? The item numbering is absolute garbage At the end of the day it is going to be the detail (or lack of detail) in your attachments that will win (or lose) you the case.  It has to be just right and you have to be consistent.  It has to be logical, methodical and consistent so it can be understood immediately.   I don't want you to give me answers to these questions.  I want you to act on them.   As I said earlier, don't post any more work you have done for now.  Wait until FTMDave is back this evening so we are all working from the same page at the same time.   If Andyorch or FTMDave suggest anything that disagrees with me, go with what they say.  They know more than me.   (I suspect one of them might suggest some kind of contents list identifying and listing all the different attachments)    
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Please help, 2 boys dla and carers stopped plus they want £1200 back!!


ST220
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Hi all

This is going to be a long winded post so please bear with me. Basically we have 2 sons that were born with a very rare life threatening immune disorder called Chronic Granulmotous disease. Both boys were awarded HRC straight away for 3 years at a time. In July 2008 our 13 month old son went into hospital in Newcastle, which is about 150 miles away from home for a bone marrow transplant. My wife went with him and as my son was in a sterile bubble my wife wasn't allowed to sleep in the same room for infection control and had to be given a flat which was funded by the bubble foundation charity to stay in. The transplant initially went well and after 5 weeks my son was discharged from the hospital into an “halfway house” funded by the NHS where my wife stayed with him. After about 3 weeks (mid September) we discovered that his graft was failing and my son was re admitted to the hospital for a top up of bone marrow. After this top up my son became seriously ill and wasn’t expected to recover as the donor graft was now rejecting my son. He developed a condition called Graft Versus Host Disease (GVHD) of the highest grade in his, gut, bowel and liver and medium grade in his skin. The liver was so bad that he became severely jaundiced and we were told that he may need a transplant, but they weren’t sure he would survive it. In addition his bowel and gut became so bad that he almost pood himself to death (sorry to be so gross but need to give you an idea of how bad it was). His stool was leaving his body so fast that they were struggling to replace the fluids he lost and he came within hours of dieing of dehydration. Thankfuly the doctors in Newcastle so were so good that they didn’t give up so after many months of battling and experimental drugs they managed to stabilise him enough to be released into the halfway house at the end of November 2009. He was finally discharged home on the 15th of January 2009. On discharge he was on 33 medications including drips that we were able to give at home and he also had to go to our local hospital 13 miles away 3 times a week for other drips.

 

Since then the amount of drugs has slowly gone down to nothing and he is cured of the original disease and generally doing much better than he ever has. However he will be 4 in may next year and is smaller in size and skinnier than my 18 month old daughter. He is quite weak for age and finds it difficult to walk and always seems to fall over, he also gets very tired very quickly and just refuses to walk, and has to be carried. He is still in nappies and still has loose stools at least 5 times a day. He has just started nursery and is learning to speak better. However the nursery refuse to take him on trips as they say he is too small and weak to walk and they are not able to push buggies. So on trip days he has to stay home.

 

When we renewed his DLA claim earlier this year we mentioned all the above but they have stopped the claim and say he is no longer entitled to DLA as he is now cured, and have completely failed to take any of the above into consideration. They have made the decision based on what we had put in the form and not contacted any doctors. We then phoned and asked them to look at the claim again and once again mentioned what I have written above. Lo and behold we have just received a letter from them saying we have to pay them back over £1200 because My son was in hospital for more than 84 days during his transplant so dla payments from sept 08 to when he was discharged in Jan 09 has to be paid back along with carers allowance for the same period. We weren’t aware of the 84 day rule so didn’t inform the DLA section that he had passed it. We have phoned them and pointed out that 1 he wasn’t in hospital continuasly for 84 days, and 2 he was discharged to a half way house in November not January, but they are saying that because the house is owned by the NHS they still class it has being in hospital so the amount quoted must be paid back in total by the 8th of November!!!

 

My feeling is this. Whilst in hospital we had to buy all our sons food, nappies etc as they aren’t provided by the hospital. The reason we are told is that most transplant patients have very unpredictable appetites and it would be a waste of money for the NHS to buy food for these patients when they may only eat a little at a time and go days without eating therefore wasting whatever the ward ordered for them. Also as they have had transplants and very low immune systems, what they can eat and drink is very limited and tends to be the more expensive pasturized food. Also they treat children of all ages that at some point require nappies or sanitary pants during the transplant due to a condition called mucositis that all transplant patients get because of the high dose chemotherapy they are given to destroy their own bone ,marrow prior to transplant and the only thing the ward stocks is a a kind of sanitary pant that is too big for small babies which meant we had

to buy nappies.

 

Also during the whole hospital stay my wife was his primary carer. The nurses play a very small role and only administer iv drugs and do vitals etc. All bathing, feeding dressing and general care is done by the parents ALL THE TIME! Obviously in the halfway house my wife was his only carer and did everything including vitals etc.. So why then should DLA and carers stop after 84 days when the need for care is greater? Also do they not take into account that as a family we were separated, therefore there was travel costs for us to visit, my wife had to buy food and drinks for herself in addition to myself having to run the family home which put a greater burden on our finances. Also all my sons clothes and PJ’s had to be boil washed after one wear which quickly destroyed everything and had to be regularly replaced.

 

I am hoping that there is someone on here that can advise us if there is any way we can avoid having to pay this money back and tell us given what I have written about how my son is now, wheter he should still qualify for some sort of DLA.

 

Unfortunately it dosen’t all end there. In feb this year my 7 year old son was admitted into hospital in Newcastle for his BMT.

Unfortunately after alot of suffering he also rejected his transplant. Unfortunately for him he was unable to have a top up us they had used all the harvested donor marrow for his transplant due to a very low stem cell count. So we had a nervous wait to find out if his own marrow would re-engraft as this is not always the case and the outcome is death. Fortunately he did re-engraft his own marrow and was discharged home before the 84 day rule kicked in.

 

He was then readmitted in July this year for a 2nd transplant from a different donor, which he had on August the 6th. This time the transplant went very well and he engrafted very very quickly and strongly. However after about 2 weeks he started spiking very high temperatures and it was discovered that he had a fungal infection in his lungs. Fungal infection for an immunocompromised person is a life threatening infection and the treatments is very aggressive. Unfortunately the drug of choice that he was given turned out to be resistant to the strain of fungus that he had and it spread to his brain. One night out of the blue he went into a seizure and didn’t come out of it. He was rushed to theatre and had emergency brain surgery. It turned out that his brain was coverd in fungal abcesses and he had fungas growing up all his veins and blood vessels from his chest to and throughout his brain. One of spores pushing through a vein in his brain had burst one of the abcesses and causes a massive bleed and blood clot which went deep into the left side of his brain. The Neuro surgeon removed as much of the clot as he could and stemmed the bleeding but was unable to remove any of the abceses . We were told that his brain injury was so bad that he wouldn’t live the next 24 hours and that if by some miracle he did survive he would be paralized and unable to speak and severely brain damaged. He was kept sedated in ICU and did survive the next 24 hours so was kept sedated for the next 3 days and slowly woken up. When he did wake he was paralized and unable to speak and still very very ill. He was also being blasted with very high doses of all anti fungals known to man.

 

However over the next few days he started to regain movement in his left hand side but was still totaly paralized on the right side. Over the following few weeks and after many hours of intensive physiotherapy he regained full normal use of his left hand side and also movement in his right leg, albeit minimal and his right leg is still very weak and he is unable to weight bear on it. His right arm is totally limp and he has no control over it. He has started to speak and can give one word answers if he thinks really hard about what he wants to say. He still gets his words muddled up and calls me Mum more often than Dad!! He is still to speak a full sentence though. The biggest thing for us is that there dosen’t seem to be any severe brain damage and he still has his personality.

 

On the 25th of October he was transferred to our local hospital. This also happened to be the 84th day of hospitalisation. So we phoned DLA and told them that he had been in hospital for 84 days and that there had also been a major change in his illness. They told us that his DLA would stop immediately as would carers allowance and all our premiums and that they would send us a change of circumstances form out first class and that we must return it by the 11th of November.

 

On the 29th of October he was discharged home. At the moment he is totally unable to walk or use his right arm or hand, which was his dominating hand. His speech is very limited and he is still very immunosupressed due to high dose anti rejection and steroids. He has mild GVHD of the skin and is incontinent. We have phoned DLA and informed them that he is home, but they have refused to reinstate DLA at the previous rate although it wasn’t due to run out until 2013. The reason they say is that we have notified them of a change in illness, which could result in his award being reduced in rate or duration or stopped all together as well as be increased and mobility added. So they are going to wait until the claim is reassessed before reinstating it.

 

Obviously most of the same also applied with this son as it did with our youngest, ie my wife had to be with him and stayed in a flat provided by the bubble foundation charity, she had to buy her own food, drinks etc as well as food and drinks and nappies for our son. She spent every waking hour at the hospital doing all his cares as the Nurses play a very small role and leave most things to the parent and we had to buy alot of clothes due to them being destroyed by daily boil washes. In addition to the family having to run another home and have visiting costs. So again I don’t think the 84 day rule is fair as our costs went up and now he is out of hospital I think they should reinstate the DLA at the previous rate until his claim has been reviewed. Obviously he is now wheelchair bound, has to be carried everywhere around the home, is back in nappies can’t talk or use his right arm, has to go to the hospital 13 miles away 3 times a week and is on 23 medicines and 1 drip at home.

 

As no one can tell us how much further he will improve or if and when he will ever walk talk or get full use of his right arm back, we are concerned that they may not give our claim full consideration, and until someone can answer the above (which they tell us they can’t) that we won’t get our DLA back and it will be delay after delay while dla are waiting for this info. We are struggling to make ends meet at the moment due to the extra costs of nappies for both boys, petrol for the hospital runs having to buy specific food until his immunity is built back up which won’t happen until he stops taking anti rejection meds and steroids, which inturn won’t happen for 6 months after the GVHD rash has gone, and all other costs like having to buy all his socks and footwear in 2 different sizes due to him having a splint on his right leg and foot to keep it straight.

 

So it’s safe to say we are panicking and very worried about how we are going to cope and what is going to happen in a few days when we fail to pay £1200 back that they say we owe them. I have already put our car which is our lifeline at risk by getting a LOGBOOK LOAN with extortionate interest rates and very dodgy practises. You only have to take a look at the logboo loans section on
CAG
to realise what a stupid move that was, but I was desperate.

 

I know I have made a very long, detailed and complicated post here but I wanted to give you all an idea of what we have been through and are now going through. Waiting around for your beloved child to pass away day upon day and not knowing when it is going to happen or if it will happen, and then wanting it to happen soon because you can’t bear to see them suffer any longer is ... well I just can’t put it into words. To go through this once is beyond comprehension, but to do it three times has damaged my wife and myself beyond repair. And for us now to be treated like this by the bodies that are supposed to be there to help us is just disgusting.

 

So please, please if anyone knows a way for us to get this £1200 debt written off and get both our boys DLA reinstated let us know. I’m sure you will all agree that there is a genuine need here and we aren’t just spongers and conning the state. Because that is how we are being made to feel.

ST220

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Just want to clarify a few points.

 

The "halfway house" is one of many normal 2 bedroom housees on residential streets in Newcastle, which are rented from a private landlord by the Nhs, and are not medical facilities of any kind. They are used by all transplant patients who are well enough to be discharged from hospital but are kept in Newcastle for a few weeks just to make sure that the parents are able to cope with all the drugs and restrictions. All care is done by the parents and no medical professionals set foot in the houses, so It's just like being at home.

 

Also even though we have asked DLA to look at our younger sons claim again, we have heard nothing from them apart from the demand to repay the money they say we owe. It's also been longer than 11 weeks since we asked them to look at it again

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ST, your previous thread appears to have been sorted. I have flagged this thread for the attention of the site team for you.

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The 84 days is set down in law. DLA is not payable for any period during which a person is maintained free of charge while undergoing treatment as an in-patient in hospital or a similar institution.

 

The exceptions to this are that DLA can, in the case of a child, be payable for the first 84 days, or periods amounting to 84 days and for adults on DLA the cut-off point is 28 days, or periods amounting to 28 days, in hospital). There is also a general exception for motability, if a motability agreement was signed before the person became an in-patient.

 

"maintained free of charge" for the purposes of DLA - A person is treated as being maintained free of charge in a hospital or similar institution unless accommodation and services are being provided for that person as a private patient or the person is meeting the full cost of their maintenance as a private patient in a private hospital. As the hospital is NHS, he is treated as being maintained free of charge.

 

How DWP would look at expenses would be as follows: In respect of the expenses of nappies and food, these are expenses that every parent of a child aged 18 months would ordinarily be expected to meet therefore would not fall under DLA, rather it would fall under child benefit, child tax credit and other income in general as they are not disability related for a child of 18 months. It would be the same for your wife's meal expenses. She would have expenses for food whether she was at home or living in parent accomodation near the hospital. The travel expenses DWP would not view as disability related. Yes they were to travel to visit the person who DLA was payable for, but the purpose of DLA is not for travelling expenses for others to visit.

 

However, I would perhaps consider posting in the NHS forum to see if there is any possibility of the NHS compensating for some of the expenses incurred which one would ordinarily expect to be met as part of the inpatient "package". For example, meals.

 

A "hospital" for DLA purposes means any of the following:

 

1. an institution for the reception and treatment of persons suffering from illness, the reception and treatment of persons during convalescence, persons needing medical rehabilitation

2. a maternity home

3. in Scotland, any institution for dental treatment maintained in connection with a dental school

4. a clinic, dispensary or out-patient department maintained in connection with any of these homes or institutions.

 

However. "similar institution" for DLA purposes is not defined. If an institution does not satisfy the definition of "hospital" above, the decision maker must consider whether it is similar to a hospital taking into account the purpose of the institution and the type of treatment provided and the level of care provided. But "hospital or similar institution" also includes those maintained by or on behalf of the Department of Health, and the NHS is part of the Department of Health. A similar institution includes a facility for after care of persons who have suffered from illness.

 

To be treated as a hospital in-patient a person must be receiving medical treatment or

other treatment which includes nursing services by professionally trained staff in the form of observation, therapy, support appropriate to the persons needs, or advice and training in domestic and social skills. It does not include straightforward care and attention by unqualified staff. A person does not have to receive treatment throughout a day for that particular day to be included in a period of in-patient treatment. The condition is satisfied if a person receives one of the above types of treatments at some time during the day.

 

From what you have written in your post, I am not hopeful that DWP could consider that your son were entitled to DLA payments after the 84th day of care until he was released home, and thus write off the money owed. What you can do, is speak to them about your ability to pay. If the money is being taken directly from other benefits, you can ask for it to be "rescheduled" - repayments spread over a longer period of time, at a lower rate. If you are paying them yourselves, you can get in touch with them and explain about your finances and ask for them to consider extending the period in which they expect it to be repaid.

 

From what you have written about your son - he would not satisfy the mobility component for higher rate mobility because it appears that although he has difficulty walking, he can walk. He has not yet reached the qualifying age for lower rate mobility which is 5 years. From his release date, given the drip and medications that had to be administered he had care needs which should qualify for the care component of DLA. The loose stools and need for nappies would likely be considered a care need at the age he is now, but it's unlikely to be enough in itself to qualify for DLA - but it's hard to say. It would depend on the type of intervention required, period of intervention required and how often intervention is required. Does he currently have any additional care needs?

 

In respect of your 7 year old - he most definately from what you have written would qualify for higher rate mobility as he is unable to walk; however if he was previously on lower rate mobility or had no mobility component, he would only qualify for this if the relevant qualifying period condition is satisfied - that this particular need has been in place for at least 3 months and is likely to last for a further 6 months. Being unable to talk would be a communication need, therefore a care need, but you haven't said much about what else he currently needs help with in respect of care therefore I cannot elaborate any further on that.

 

When an award is to be revised or superseeded, payment can be suspended if it looks as though the revised or superseded decision would result in a decrease in entitlement or a loss of entitlement to benefit. Where it looks as though the revised or superseded decision would result in an increase in entitlement, there is no need for DWP to suspend the benefit.

 

I would strongly urge you to explore if there are any Welfare Rights organisations in your area which could help. Welfare Rights organisations are free services, they can advise you generally on your welfare rights, specifically on your welfare rights and, if desired, can act as a representative in dealings with DWP to take some of the pressure off. They should have specially trained Welfare Officers who will know all of the inns and outs of DLA, and the law which relates to it. If you can, make an appointment with one to go through your son's DLA claim issues with a fine toothed comb. At an appointment they will be able to ask you questions directly to make better ascertations in regard to your Welfare Rights as they stand at the moment. You can find them usually through your local council, CAB or other advocating services in your area. DLA is a complicated benefit and although you have given us lots of information, there isn't enough information which would be relevant to a current DLA award, or for us to look at whether there would be a likely increase, decrease, or loss of entitlement therefore I can't say whether they are right in suspending payment at this time.

 

In the meantime, to make ends meet there are organisations which can help with basic neccessities, such as food banks - an example here. You can "food banks" into your search engine to see if you can find one in your area. There are also lots of disability charities that may be able to help meet specific expenses for your children. For example, the family fund.

My advice is based on my opinion, my experience and my education. I do not profess to be an expert in any given field. If requested, I will provide a link where possible to relevant legislation or guidance, so that advice provided can be confirmed and I do encourage others to follow those links for their own peace of mind. Sometimes my advice is not what people necesserily want to hear, but I will advise on facts as I know them - although it may not be what a person wants to hear it helps to know where you stand. Advice on the internet should never be a substitute for advice from your own legal professional with full knowledge of your individual case.

 

 

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Excellent post Erika, and alot to digest!

 

Thank you for taking the time to respond. I will now spend the next few days exploring the options you have suggested and will come back with any questions or findings later.

 

Once again thank you!!

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Just wanted to say i am so sorry for you ............ Like you i never knew about the 84 day rule but i did ask on here and then rang them , i had to tell them all dates my daughter has been in , with a comment from dla we do like to be told when there going in hosp , my comment back i dont always know in advanced and she gets admitted as an emergancy sometimes via a &e . but have made sure that its all down now on there system .Am lucky as she has not gone anyway near the 84 days ... My thoughts are with you and your family .................. cat x

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