- Do it on-line. This has several advantages (in my case being neater for a start) and is not as difficult as you might think. You will need to register and get a Government Gateway ID and password. But after that it is pretty much plain sailing. I have looked at the form and there are definite benefits to doing it this way. The questions are more detailed but you have more space for your answers so you can explain things properly. You can move back and fore through the site so you can make corrections or add things you'd forgotten. You DO NOT have to do it all at once, there is a save feature so you can do a bit at a time. You will need your ID and password to access you form so make sure you write these down and keep it somewhere safe. Web address http://www.direct.gov.uk/en/disabledpeople/financialsupport/dg_10011925 Anyone having difficulty finding their way around email me and I will send you a detailed helpsheet with illustrations, these will be ready next week.
- Do not sell yourself short. When answering the questions you must think of how you are on your absolute worst day. The day you can't get out of bed, need help to get to the bathroom, eat, take your meds. You may only have a bad day once or twice a month but you have them and they are the days when you need help.
- Supply documentation. you will be asked to proved proof of medications etc. DO NOT SEND PHOTOCOPIES, they will not accept them. If you have a repeat prescription form copy it, keep the copy for your own use and send the original. If you have drugs delivered by courier send the delivery note, this often has the advantage of having your name and address, the hospital's name and address, the type of medication and sometimes the condition it is for. you will also need a recent hospital report or covering letter from you PH center, again copy it and keep the copy as proof you have sent it. When you have gathered all your documentation pop it in the envelope with a covering letter, the letter should contain your name and address, National Insurance number, the reference number for your on-line application (you will get this when you finally submit your form), and a list of all the documents included in the envelope. It is a good idea to include results from your latest 6 minute walk test including you oxygen sats before and after to give a clear indication of what walking does to you. Make sure the report does include the sats results though, I made the mistake of sending a report that said I could walk 350 meters in 6 minutes but did not log how many breaks I had (when the clock is stopped) or what my sats were when I'd finished, they reject my application out of hand without reading any further. Include as much information as you can, I would add the addresses of websites that can describe what PH is, though when I did that I was told they do not look at websites so my answer was to print off the relevant pages and add them to the pile. If you have received a renewal or application pack you can send the documents back in that. Make sure you clearly state they are supporting your ONLINE APPLICATION. You are not dealing with rocket scientists and they will need it spelling out to them. Do not staple things together, at most use a paper clip and number the documents to correspond to the list. Again keep a copy.
- Keep It Real. Be realistic about what you can or cannot do and explain why. The magic cut off point for DLA is being able to walk 50 meters without stopping or needing help. We all know that for those with PH we can often walk further than that but it is what the effort is doing to us that matters. A good explanation (and I borrowed this from someone on the PH website, thank you) goes something like this. " The pressures in my lungs as so great that my heart has problems pumping the blood around my body, the blood does not carry enough oxygen which means that it is difficult for me to carry out any physical activity such as walking, lifting carrying etc. Walking makes this situation much worse and the lack of oxygen can cause me to become dizzy putting me in danger of fainting and hurting myself." I would still put your distance down as 50 meters even with the explanation as if they see anything above that they are unlikely to read any further. Remember we are dealing with someone with a tick box and no common sense.
- Don't Lie. Stretching the truth is OK but a blatant lie is out. Firstly your specialist center will not be able to support your statement and secondly if you have to have a medical you'll have to prove what you have said. So if you have said you cannot carry anything and then walk in with a handbag the size of a suitcase it will immediately put your claim in doubt.
- KISS (Keep It Simple Stupid). Don't use abbreviations without explaining them at least once. It is no good saying you have IPAH because they won't know what that is or bother to find out. Idiopathic Pulmonary Arterial Hypertension followed by the abbreviation should be enough to enable you to use the IPAH only in later questions. Do not use jargon, we might be used to hospital speak but they won't be, explain as though explaining to a rather thick child and you cannot go far wrong. Also there is an advantage in giving your condition its full title. In this case there are three complicated long words before they get to the hypertension bit. A bit difficult to ignore them and put it down as just high blood pressure.
- Needing Help. Embarrassing as it might be you must lay it on a bit thick about the help you need. you might think you do a lot for yourself but think about it. Does someone bring you your meds with a nice cuppa, set up and/or clean any equipment you use or cook the evening meal because you are too tired to do it yourself? If the answer is yes then put it down. You will be asked how often you get help, the emphasis here must be more often than not. Always put down that you have this sort of help every single day, they are not living with you and cannot prove you don't. If you have a carer say so. Never use words or phrases such as sometimes, occasionally, mostly or 'when I'm really ill' in your answers as they sow the seeds of doubt about how much help you really need. If you are on oxygen then you will need to point out that being on oxygen and near a cooker is not a good thing. When you come to the 'preparing a meal' question remember it means can you get to the shop to buy the ingredients, carry it home, prepare it, cook it and wash up afterwards. If you cannot do that then you need to say which elements you need help with. If you are on Warfarin then being around sharp knives is also not a good idea. Warfarin use can also be used in the 'walking' question, point out that if you fell and banged your head you would need to go to hospital to get checked out as you are in danger of internal bleeding and possible stroke. This can cover why you cannot walk far and need someone with you when out and about.
- Meds. List your medications and give the dose eg 25mg and the frequency eg 2 per day. List ALL your meds whether directly associated with your condition or not. The aim is to show that your illness has a significant impact on your life, Taking 6 -7 meds several times a day has a severe impact.
- Supporting Statement. It is a good idea to add a supporting statement to your document pack. Do not write and essay, they won't read it, keep it clear and concise. Say which point on the form the addition refers to, 'I wish to expand/explain more fully my answer to question 12b' helps them focus on what you want to say. Make sure you have used the word 'terminal' in at least on of your answers. If you have not given a simple explanation do it here. you can use the explanation I gave earlier on and repeating yourself is not a bad thing in this case. You should also add this (again borrowed, thank you, thank you) 'This is a rare condition with only 4000 out of 68 million UK residents diagnosed. There is no cure for this condition except for transplantation but sadly many died before donor organs become available." If you are or have been assessed for transplant say so, it doesn't matter if you are not on the list yet.
- Check before sending. Check, check and re-check the form before submitting it. Even get someone else to check it for you as another point of view can be helpful.
Hope this helps, if you have any questions not answered here then please email me or pm me on the PHA website. I will add to this if I find anymore info and of course I will keep you update on my application.