By Rosie and Jo’s mum.
I think I would have really benefited, in the early days, from someone warning me of two things. The first was how much paperwork you accumulate when you have a child with additional needs. The second was how important it is too keep good, clear easily accessible records so you can refer back and remind people of what has been agreed in the past.
By the time I realised that I needed a decent filing system, there was a mountain of paperwork to sort through and the task felt too big to tackle in amongst all the crisis management we were having to do each day. I was also struggling because agreements that had been made in meetings, face to face conversations and phone calls were not being carried through into actions and I needed written records to back me up.
Over the years, I’ve learned a few things. Some the hard way, like don’t ever take an overfilled lever arch file out of the house. Always have one spare so there is never any danger of you spilling hundreds of carefully filed pieces of paper all over the floor.
Other things I’ve learned include:
Keep copies of emails from professionals in their own folders in your inbox, then, when you think “I’m sure the OT sent me that”, you have fewer emails to look through.
Print off reports when you get them, correct any significant errors and send them back asking for the document to be amended and reissued. If you don’t, the incorrect information may appear in other important documents. Once something is recorded as fact, it is very difficult to change it.
Keep lever arch folders of letters and reports using marked dividers to split them into different services or professions, e.g. CAMHS, OT and write the date of every letter and report on the top right corner of the front page. Keep each section in date order, most recent at the front, to make filing new reports away easier and keeping the more up to date information most accessible.
Send an email confirming every conversation and meeting. Short and concise is best and request a read receipt. I find that this is a helpful format to use.
Dear Mrs Grey
Thank you for meeting me today with…..
My understanding of the conversation is that…..
You expressed the view that…….
Mr Pink told us that he had observed…..
I explained that my son feels…….
I understand that……
I remain concerned that……
We agreed that I will …… and you will……
You told me that you will refer my son to xxxx service within x weeks
We agreed to meet again in x weeks/months or on xth of May to review the situation.
If my understanding of our meeting/conversation is different from your in any way, please let me know so we can clarify the matter.
If you attend a meeting where there is an agenda, print the agenda with large gaps between items where you can make notes. Write up those notes ASAP, preferably within a day of the meeting. If you are unsure of what has been agree, ask everyone to help you decide what to write down.
When raising a concern by email, start by listing on how many occasions you have previously raised the same issue, e.g. “Dear Mr X, this is the third email I have sent to you to express concern about….. in the last three months.”
If you receive a paper report, ask for an electronic version too because that makes it much easier to copy and paste and to share it with other professionals. Local authorities can use only providing paper documents as a way of making it harder for you to request amendments to documents. They will have a way to send you encrypted files, if you request it, although it can be a little more of a long-winded process.
Look back through any relevant reports just before meetings to remind yourself of recommendations that have already been made by professionals. This will be really easy if they are filed together in date order. I know of several parents who, when called into school to discuss a problem behaviour, have asked the teacher whether they are implementing previously recommended strategies. It often turns out that they aren’t and, once they are reinstated, the problem is resolved. This is much better than the child being blamed or time and money being spent on an unnecessary new report.
Don’t assume that all the professionals working with your child have seen all the reports about them. Offer to send electronic copies where you think the content it important.
If meetings are held without you present, request copies of minutes and action plans. Unless there is a child-protection concern or other children have been discussed at the same time, there should be no reason why you can’t have these.
Think about the way you label the files, especially if they are on an open shelf. Your child may not want their friends to see the files with their name on and ask what they are about or have a snoop while left alone in the room for a few minutes.
Consider carefully allowing your child to read the information you store about them. It can be helpful for them to know how professionals interpret what they do and say and I believe they have a right to know what is recorded about them and be given the opportunity to challenge it. They can also give you a different perspective on some situations recorded in reports which you can then pass on to those professionals if appropriate. Obviously it also depends on the age and stage of development of the child concerned. There is also an argument that some of the information recorded about them would be unhelpful for a vulnerable child to see so it’s your call, as their parent, to work out what is best for your particular child.
I know that some other parents prefer to store all their files electronically, carefully backed up so if you’re happy to share hints and tips on that or any other ways to record and store information, please feel free to add them in the comments.
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