For Findlay

When you have a fragile baby, your heart cracks a little with every effort they make to live. It cracks again as they grow and face the things they cannot do. But nothing compares to the shattering when you lose them for good. That’s why every small win matters - each one is celebrated fiercely, because joy is precious and never guaranteed.

RIP Findlay James-Bruce. You achieved so much, and I am honoured just to have known you. 

Our Journey from DLA to PIP: A Living Diary

Under the DWP benefits system for England and Wales, children receiving Disability Living Allowance (DLA) must transition to Personal Independence Payment (PIP) once they turn 16 - but it’s not automatic. The process begins months earlier, when the DWP invites a parent or guardian to become the young person’s official ‘appointee’. Alongside PIP, there’s also the option to apply for credits-only ESA, adding another layer to the journey.

This blog is a living diary of our experience navigating Andrew’s transition. It may span many months, and I’ll be updating it as we go - one step, one date, one decision at a time.

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Jump to end for most recent entry

3 Apr 2025 - Brown envelope time! Letter arrives from the DWP inviting me to apply to become Andrew's Appointee. This also gives me an opportunity to nominate a different bank account - something we’ve anticipated by setting up a basic current account with online access. Posted back on 7 Apr.

21 Jun 2025 - I've heard nothing, so I phone the DWP. It turns out that, in my excitement to provide the new details, I forgot to sign the actual form (my fault - the signature line is immediately below the building society roll number space, which wasn’t relevant, so I didn’t see it). I duly receive the form back, sign it, and post it off again

21 Jul 2025 - Still nothing, so I phone again. They've got my form and say they'll process it the next day. I wonder how long it would have taken if I hadn’t called.

23 Jul 2025 - DWP letter of 'New or existing appointment to act' received.

19 Aug 2025 - Andrew turned 16. 

19 Aug 2025 - I tried to advise Universal Credit via the Journal that Andrew is staying at school post-16. They don't want the information yet, and cannot retain it - "come back later".

20 Aug 2025 - On the HMRC online system, I confirm that Andrew is remaining at school post-16. HRMC would not accept this information before his birthday.

28 Aug 2025 - DWP letter ‘Your Disability Living Allowance is ending’ received. So the next day, I phone them up and start the process for claiming PIP. I'm told the forms can take up to four weeks to arrive, and that I should chase it if they haven’t come by then. I’m also cautioned that I’ll only have four weeks to complete and return the forms once they do arrive.

1 Sep 2025 - On the UC online system, I eventually find and complete the form to confirm Andrew is remaining at school post-16. It was really not obvious, you have to amend the child's record.

25 Sep 2025 - Okay, so it’s only been 3 weeks and 6 days, but nothing has arrived! I phone up - lesson learned: select option 2 for an ongoing application, not option 1 for a new claim (the latter is answered in seconds, the former took 20 minutes!). Apparently there’s been a “hiccup” on the system that prevented the forms from being sent out. This is resolved, and I’m given the two 4-week cautions again.

5 Oct 2025 - The PIP form has landed. It’s dated 25 September, giving me until 25 October to return it - though thanks to the postal service, we’ve already lost a week. Still, first impressions are cautiously optimistic. The form leans heavily on "Yes/No" questions and open narrative responses, which is a relief. I’m not being asked to tick a box declaring how disabled Andrew is for each task and then defend it in miniature essay form. I remember the DLA form vividly - scribbling in margins, spilling out of boxes - because Andrew simply didn’t fit their neat categories. It’s also reassuring to see the EHCP listed as a suggested supporting document. We don’t have much else. There’s been no follow-up from CAMHS since his autism diagnosis, and no further contact with Audiology since we concluded hearing aids weren’t the right fit. So the EHCP may have to do a lot of heavy lifting.

11 Oct 2025 - The PIP form is finally complete and back in the post today. For medical contacts, I’ve listed the GP who conducts his annual Learning Disability Health Checks, the school’s Special Needs Nursing service, and his disability Social Worker. For supporting documents, I’ve enclosed his EHCP - still technically current, though now three years old - alongside the most recent Annual Review paperwork. Each question on the form is paired with a typed supplementary sheet: an opening paragraph summarising his difficulties with the task, followed by a reference like “see additional sheet X, answer to Question Y.” It’s a tidy bundle now, with each answer clearly laid out. Typing everything out was definitely easier than trying to squeeze it into the paper form’s boxes. It does make you wonder: why is Universal Credit fully online, while PIP and other disability-related benefits still rely on paper forms? A small irony in the age of digital everything.

22 Oct 2025 - I'm not known for being the most patient person! I called up the PIP team to check whether the form had been received, but they said it was too soon to check.

3 Nov 2025 - I called again, the PIP form has been received, scanned, and is on the system ready for an Assessor.

6 Nov 2025 - Andrew had a Learning Disability health check at the GP Practice, so I took the opportunity to ask them for a Fit Note to support an application for Credits-only ESA. Seriously, am I the only parent of a learning disabled adult in their practice? They didn't have a clue. I left them with three pages of information, mainly from the wonderful Contact web site. I'm not optimistic.

20 Nov 2025 - It took a little to-and-fro with the GP Practice, who initially countered with "We don't provide Fit Notes for those under 18" and "What do you want it for again?" but I stood my ground and today the Fit Note arrived. It says that Andrew is unfit for work through ASD and SLD "indefinitely". So I telephoned the ESA line (as an Appointee you cannot apply online, this one is a telephone call), made the application for Credits-only ESA, and uploaded the Fit Note immediately after the call. I should expect to hear from a Decision Maker in about three weeks as to whether they want to see Andrew at a DWP Centre; and, more importantly, this will now trigger a Work Capability Assessment to classify him as LCWRA which will then carry through to any subsequent benefits applications such as Universal Credit in his own right.

Fun Times - When sensory seekers grow up

When Andrew was much younger, it quickly became clear that he sits firmly at the sensory-seeking end of the spectrum. Loud music, flashing lights, fresh air, and hard textures were his comfort zone — not soft fluffiness or quiet corners. So we embraced it. His bedroom sparkled with disco lights, the lounge glowed with a bubble tube, and our ears adjusted to a symphony of noisy toys. I’m fairly sure he owns every VTech Toot-Toot car ever made — including two ‘Go Go’ cars from the USA and a German-singing forklift truck. Soft play was a regular fixture, and trampolining became a weekly ritual 

But small boys grow into bigger ones. And meeting their sensory needs becomes a more ambitious endeavour. Andrew, it turns out, is now an adrenaline junkie. 😎

These days, holidays are planned around theme parks and thrill-based activities. Last year, thanks to a Family Fund grant that allowed us to purchase a Merlin Pass, we camped near the Thames and pre-booked two visits to Thorpe Park and one to Legoland. By sheer luck, our second Thorpe Park trip coincided with the public launch of its newest hypercoaster, Hyperia. We showed Andrew’s disability pass to a staff member and were ushered into the accessibility queue - bypassing hundreds who’d been waiting since opening. Andrew? He loved every second. I think he ticked off every ride in the park that day.

So why am I writing this now? Because we’ve just returned from this year’s thrill-seeking adventure: ZipWorld in North Wales. We tackled the ziplines at Penrhyn Quarry (Titan 2) and Llechwedd (Velocity), and I can’t praise the staff enough. They were welcoming, thoughtful, and absolutely committed to making sure Andrew had the best possible experience. 

Of course, we may be making a rod for our own backs. As Andrew grows older and taller, his sensory appetite grows too. Meanwhile, we’re getting older - and theme park rides take a little longer to recover from. I hope we’ll stay fit and adventurous for many years yet, so we can keep sharing these experiences with him. But Andrew will outlive us, and one day we’ll need to find carers who are not only willing, but excited to take him on these kinds of outings.

Because for Andrew, sensory joy isn’t just a preference - it’s a lifeline.