This post kinda slots into a short run about when Smiler switched from Disability Living Allowance (DLA) to Personal Independence Payment (PIP) when he turned 16 - you can find the other posts here (part one) and here (part two) I thought it might be useful to share these tips and pointers for others who are filling in PIP forms for their child (or even themselves, so please excuse my references to 'your child'). It seems the Department for Work and Pensions (DWP) are retaining DLA for under 16's (for the time being at least), so this switch from one to the other at age 16 is here to stay. There's a few photos of Tilly the kitten thrown in too, just to relieve the tension!
Making a start:
Working out where to start when you're filling in any of these forms is a bit of a nightmare, but often the first page or two are basic info about the person the form is about - date of birth, address, GP contact info - this seems to depend on whether the PIP claim is brand new, or if there was already a DLA award - if there is a current DLA award this info might be printed on there already, in which case you need to move on to listing health professionals, so skip down the page until you see the ◇. Double check on the front page of the form whether you must use black ink or all capital letters or mirror writing - I think they've relaxed a bit in the last 15 years or so but it's best to double check! Take a pen (not a pencil, even if it doesn't specify what colour ink you need to use, they still want pen I'm afraid) and a deep breath and make a start. Fill in the things that you absolutely know to be accurate - middle names and dates of birth and postcodes are important here. If you aren't sure, leave it blank for now, and try and find out in a minute - especially things like contact phone numbers - you really don't want to guess!
◇ So, question 1 asks you to list health professionals that your child sees. As you're asked for addresses, write out the whole address, including the postcode. If you don't know the whole address, for example of the GP surgery, Google is your friend here - type in the name of the practice and the town, and you should be able to find their website, and if you go to it there will be the full address (and phone number, you'll need that too) either on the main home page or a contact page. Might also be handy if you're not completely certain how to spell the name of the GP, as there's probably a list of them on the site. Go back through your calendar or any letters you have to see when they last saw your child, and if you really can't work it out you could ring the surgery / hospital / office where they are based and ask if they could look it up for you - always be friendly and polite though, as you are asking for their help, and the people that answer those phones have a million and one other things to do!
Question 2, disabilities and medications:
Next up, question 2 asks about disabilities and medications - again, don't guess at spellings! The disabilities list you can add to as you go along, so write in the things that spring to mind, but don't panic if your mind is blank and you can only think of one or two when you know there are others - just leave that bit for the moment. As you go through the main bulk of the form you might be reminded of specific things so just add them as you think of them - don't worry if they end up jumbled up as opposed to being in priority order - the main thing is that they're on there. (If you prefer being more organised then don't write any down on the form at first, instead, take a piece of paper and attach it to the page with a paperclip, and write them on that. Add to it as you go along and then, when you're finishing up the form and checking for anything you've missed, decide on an order and write them on the form.) Don't use abbreviations or shortenings on the list to avoid any confusion, but don't worry if you don't know the exact 'proper' medical words for things - for example I write that Smiler's left elbow is dislocated and fused, even though clinic letters and so on state that he has "congenital partial radioulnar synostosis with associated posterior subluxation of the radius".
If you're struggling with spellings of medications you could try looking on the medication packaging, or on a repeat prescription list - copy it exactly, as just a couple of letters different might be a completely different medicine for a completely different condition. If you can't remember all the meds off the top of your head don't worry, just have a look through where you keep it all, or else think through what you dose them with each day, or if all else fails go into your GP surgery and ask if they can print you off a list - then you have spellings and strength and dose.
If you add any extra bits of paper to the form (like the repeat prescription list), write on it the full name of the person whose form it is (whether that's you or your child), their date of birth, (yes I know its printed on the sheet, but better safe than sorry) and their national insurance number (NI#). If they don't have a NI# yet but have claimed DLA before, their DLA reference number - 2 letters followed by three pairs of numbers followed by another letter - is going to be their NI#, so use that.
When you turn the page and see "Question 3 : preparing and cooking food", close the form and stick it back in the envelope with the pen you've been using, as that is the start of the more complicated questions, and the ones that might be more difficult to answer. Make sure you've put the freepost envelope that they've sent you with the form back in with it, and noted the date it needs to be returned by on your calendar / diary / phone so you don't miss the deadline. Then give yourself some kind of treat for having made a start - whether that's a cuppa, or a walk, or half an hour of Jeremy Kyle. These forms are emotionally draining, and it's important that you do whatever you can to take care of yourself while you're trying to get them filled in. Now that you've made a start you can feel that little bit more positive next time you sit down to do some more.
Before you get started on that main meaty bit of the form, there's a couple of websites I'd recommend checking out which share clear and relevant guidance, which should take some of the fear out of it.
First there's the Benefits & Work website section on PIP claims, where you can download a pdf of some sample pages from their guide to filling in the form, and if you so choose you could become a member of their site by paying an annual fee (£19.95) and get the whole guide. I personally didn't sign up, but would certainly have considered doing so if I was still struggling with the forms after doing my own research, or was going to appeal the decision.
The other website that I found hugely helpful was this one - Citizens Advice. It goes through, question by question, what the DWP mean by the question (and what they don't mean, which I found very handy), and the kinds of things you should keep in mind when answering it. Personally I found the reminders of whether an activity could be completed 'safely' really helpful, as because of Smiler's variable mobility and stability there were several activities he could potentially complete with a lot of support, but 'safely' - well, pretty much nothing he can do is done safely!
If you feel up to it and have the time, I'd recommend reading the 'descriptors' for a question before writing anything down (there's a link to them on this page), and work out which level you think appropriately describes your child, bearing in mind the explanations of the language used in the descriptors for words such as "prompting" and "assistance". Then you'll find it easier to describe your child's needs in a way that is relevant to the question.
The Citizens Advice site also covers what you could consider writing in the 'extra information' space for each question on the form. To give you a little context, Smiler's form contained extra info on every single question - yep - every single one. When you're filling it in you might feel that you're repeating yourself, or that since you've explained something similar in a different answer there's no point in explaining this point on this question too, but my understanding is that each question is treated completely separately by the person who looks at the form, so they can't / don't / won't assume anything. For example, you may have carefully explained in question three that due to the way your stroke affected your right side you now can't grip a knife properly to chop vegetables when preparing a meal, and that when you have attempted to do this previously you have accidentally sliced your hand open and required stitches. You will still need to state in question four that you cannot cut your food up on your plate because you cannot grip cutlery well enough to be able to do this safely, because of the way you were impacted by the stroke. They will not carry the info from question three to question four, so you must tell them again otherwise they won't consider that aspect of your condition in relation to that question. As I said, we filled the lines they give you for extra info for every question, and a couple carried on on the 'is there anything else you want to tell us' page towards the end too. If you need to do this, write at the end of the extra info bit "continued on page ..." and write the page number of the 'anything else to tell us' page, then on the 'anything else' page clearly write the question number and "continued from page ..." - I know it sounds like overkill, and I probably haven't explained it very well, but you need to make it as simple as possible for the person reading the form.
Once the questions are answered:
Once you've filled everything in, either photocopy every page, or else take a photo on your phone or tablet of everything you've written - it might feel like a waste of time but, speaking as someone whose child's DLA form was once received by the DWP but then somehow mislaid, it is absolutely worth it not to have to start the whole thing again from scratch! Double check that you've signed where you need to (this might be in more than one place), and that you have gone back if necessary and filled in details you might have wanted to double check for accuracy, such as the spelling of the GP's name, and the postcode of the hospital; or that you were adding to as you went along, such as the list of conditions. Take a look at every piece of paper you're adding in to the form, and make sure they all have a name / date of birth / NI# / question number on them.
So, answer questions ✔
Add in extra info ✔
Sign the form ✔
Take photos or photocopy every page ✔
Choose some supporting evidence ...
Depending on the health and/or development issues faced by your child or young person, this might be really straightforward, or an absolute pain in the bum. You might have loads of paperwork, or hardly any. You might feel like the paperwork that you have which is recent is very optimistic about their capabilities, and everything you feel is more accurate might be dated a year or two ago. I feel it's a judgement call on what to include and what not to.
With Smiler's we used a couple of clinic letters - you know, those ones you get after a hospital appointment which has a list at the beginning of their diagnoses? I made sure they were relatively recent - dated within the last 18 months - and from different professionals. I think one was from the neurologist, and the other was from one of the orthopaedic surgeons. As well as these, I had a copy of what the physios here in Bristol call his MOT - they measure his joint ranges, how smooth or jerky his movements are, how far/well he can walk - it also describes all his equipment - his splints, protective helmet etc, and I thought this was useful for the DWP to hear from someone other than us.
Last but not least, I had the letter that had been sent by Smiler's GP after his first official Annual Health Check (AHC) which is something offered to people with a learning disability over the age of 14. It stated his height and weight, all the meds he's prescribed, conditions he has been diagnosed with, all the other professionals that he sees and what was discussed about other aspects of his life, such as any surgeries coming up, what Smiler enjoys doing with his time and how he feels about school. For Smiler this was a good round up of everything, and was, I thought, an accurate impression of his life. I do, however, know other people who found that the GP was very very positive about everything and didn't mention the things that were not going well, so depending on how balanced and reflective of your teenager you feel it is, you might choose to put it in, or not!
So, form and photocopies (don't send originals as they may lose them and even if they don't, they won't return them to you) of supporting evidence in the envelope, triple check it's signed (yep, I've sent a DLA form before without a signature), then pop to a Post office to post it - that way you can get a (free) proof of posting that you can put on the fridge, and forget about it for a week or two.
Last (and most important) tip:
Once the form is on its way, take a deep breath and a fresh piece of paper, or open a new document on your laptop, or note on your phone and start writing the other things. The amazing, wonderful, fantastic things about your child. What you see when you look at them. Their gorgeous smile, their soft sounds, their fluttery hands. Those things that they can do, whatever those are. Write about the way they stroke their pet rabbit, so gently, with eyes full of love. That time they giggled so much they were almost sick when you slipped over on the icy pavement. The way they scrunch up their nose and stick their tongue out of the side of their mouth when they're concentrating so hard on their homework. The things that you love about them, the things that make them special, the things that make them them. The way that their hair smells when you hold them close, the cheeky twinkle in their eye when they're up to mischief, the high pitched shriek when they feel the warm water around them in the bath. This piece of paper, this list of memories of smiles, of celebrations of achievements, and of love, this reflects your child. Not the form you just posted - that was simply the admin we have to take responsibility for as part of parenting. Your child is so much more than that, and you are the one who knows all those traits that make up their personality. Give your mind an opportunity to balance that form with the other things. The things that actually matter. Put the sheet on your fridge, or fold it up and put it somewhere safe. Then on those days when everything is so hard and you're exhausted and you don't know if you can do everything anymore, you can take it out and remind yourself who your child really is, and what the things are that really matter.
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If you've found this useful, it would be great if you could let me know (and share if with anyone who might find it helpful) - and if not, feel free to let me know why!
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