If you have a phobia of forms, I recommend you don’t become severely disabled

I wish to make a complaint. When you become disabled, no one warns you about the paperwork. Very soon you realise that your new life is going to be dominated by form filling. Disability is undoubtedly a bureaucratic business. If you have a phobia of forms, I recommend you don’t become severely disabled.

First there are the benefits to claim. Most disabled people with a mobility impairment are eligible for disability living allowance but, in order to claim it, it’s necessary to fill in a lengthy form. After the operation to remove my spinal tumour, it was obvious straightaway that I would never walk again. But someone in the Department of Social Security (as it was called back in the 80s) clearly believed in miracles because they didn’t grant me disability living allowance for life until three or four years later. This meant, of course, that in the meantime there were more forms to fill in.

Then there are the care funding forms. If you have high care needs and go out to work, as I do, then you will receive your care funding from not one, but three different organisations. My home care funding comes partly from the local authority social services department and partly from a national government agency, the Independent Living Fund. My assistants at work are paid for by the government’s Employment Service through the Access to Work scheme.

As you would expect, each of these organisations requires recipients of its funding to account for how they spend their money. But, of course, nothing in life is straightforward. Frustratingly, three different organisations means three different bureaucratic systems and three different sets of forms.

Social services send me a form every three months which asks me to state my care expenditure, broken down into expenditure on directly employed carers, care agencies, employer's national insurance and on other expenditure (for example, recruitment costs). The Independent Living Fund carries out a review every two years involving a completely different form, which asks for information on all aspects of my financial affairs. While the ILF have improved the form’s design, it still takes ages to complete.

The Employment Service expect me to pay for my work assistants upfront and to reclaim the money from them afterwards. Once a month I have to compile an invoice setting out what I’ve spent on personal assistance at work (my work assistants’ pay plus the cost of any annual leave or sickness cover I’ve had to organise). It's here that my employer is very helpful. I send the invoice to my employer's "access unit" who then refund me and reclaim the money from the Employment Service.

Then there is the joy of dealing with Her Majesty's Revenue and Customs (R&C). I employ four carers myself and I pay them weekly by standing orders. (By the way, many disabled people now prefer to call their carers ‘personal assistants’, so that’s the term I’ll use from now on). Every week I have to adjust my PAs’ pay via online banking. Sometimes this is because they work extra hours. But even if their gross pay stays the same, the amount of income tax that has to be deducted varies most weeks. (Why this is the case I have absolutely no idea. R&C, like God, works in mysterious ways.) Changes to the standing orders have to be done by the Wednesday of each week so that they can take effect before the money leaves my bank account on the Friday. (Normally I make the adjustments at the weekend when I have more time).

I’m now going to bombard you with R&C jargon – and you will notice they are very fond, for some reason, of the letter P. For each of my PAs I keep on computer a copy of the R&C form called a P11. This sets out a comprehensive record of all their salary information to date including all payments I make to them and all official deductions from their salary including income tax, national insurance and student loan payments.

Calculating income tax and employer's national insurance is made easier by a R&C CD-ROM. R&C post me an updated CD-ROM every February, ahead of each new tax year, and this has to be installed on my computer. (Usually they send it to me automatically but if it hasn't arrived by the beginning of March I have to order it). However, that’s not the end of it. Oh no! A second CD-ROM is issued in late April to take into account any changes made in the budget. As I said earlier, nothing in life is straightforward.

Once the PAs' income tax, national insurance and student loan payments have been worked out, these have to be entered onto my copy of the P11 document. I then have to produce a payslip for each PA, again setting out their gross pay, deductions and their net pay for that particular week plus the running totals of how much income they’ve received and tax paid to date during the financial year.

Every month it's necessary to add up all the PAs' income tax, student loan deductions and national insurance, together with employer's national insurance contributions to find out how much I owe R&C. This involves using the 'P32 calculator' on the CD-ROM which fills out the electronic P32 form. I then have to transfer the money from my bank account to R&C between the 6th and 19th of the following month.

Finally, every April, I have to calculate and compile the 'end of year' return, called a P35, and send that online to R&C with any outstanding payments. At the same time, I have to give each PA I employ a statement summarising their year's earnings and deductions, called a P60, and submit electronically to R&C a P14, which is their version of the P60. Yes, R&C are definitely obsessed with the letter P.

Whenever a new PA starts working with me, there are administrative tasks to be undertaken. It's necessary to ask a new PA for her P45, which she should receive from her previous employer. But if she is unable to provide a P45 straightaway, for whatever reason, I have to ask her to complete another document, called a P46. This is a declaration by the PA of her current employment situation. I then have to submit online copies of the P45 and P46 to R&C via the R&C employers' website, and create a new standing order.

Similarly, whenever a PA leaves, I have to complete and give her a P45 on paper and submit a copy online to R&C. Paper copies of the P45 cannot simply be printed off from the R&C website or CD-ROM (because the R&C wants to ensure that only bona fide employers have access to them) so these documents have to be specially ordered from R&C.

Of course, recruitment of a new PA always involves other administration. I have to place job adverts in newspapers and with the job centre. I have to draw up a new contract and check the job description is still up-to-date. And I can be inundated with CVs – on one occasion I received more than 100. Believe me, sifting through 100 CVs is not my recipe for an exciting weekend.

And if all that isn’t enough, there are the ‘user satisfaction surveys’ to complete. Ever since the arrival of the Commission for Social Care Inspection, care agencies have been falling over themselves to obtain feedback from their clients on how well (or not) they are doing. As I use four different care agencies (two on a regular basis and two for covering my PAs’ annual leave and sickness), every month or so it seems I receive a survey through the post asking me to give my views on the quality of service I’ve received. Us crips should receive letters of thanks from Royal Mail for all the business we generate for them.

Under R&C rules, all tax and related records have to be kept for a minimum of six years. Social services and the ILF require all PAs’ payslips, time sheets, care agency invoices and other care documents to be retained for seven years. In other words, a large filing system is essential. I have numerous boxes and drawers full of care-related paperwork. There is so much of the stuff, I have no choice but to store a large proportion of it at my parents’ house because I don’t have enough space in my flat. Frankly, I pity any disabled person who doesn’t have a large property or helpful relatives. I don’t know how they would manage to store all the paperwork disability entails.

On average I must spend about three hours a week on disability-related administration. I’m lucky in that my Dad, bless him, helps me considerably. He undertakes a significant proportion of the communication that needs to be done with Revenue & Customs. Because I employ four PAs, in the eyes of R&C, I am effectively a small business. Indeed, recently my Dad received a letter from R&C addressed to the “payroll manager for Victoria Brignell”. That caused some amusement in the Brignell family, I can tell you.

Victoria Brignell works as a radio producer with the BBC. After reading classics at Downing College, Cambridge, she undertook journalism training at Cardiff University. She lives in West London and is 30 years old and is a tetraplegic wheelchair-user.