Disabled DC and professionals in the home

[CompletelyOverwhelmedAgain]

I have 2 severely disabled DC. One in particular is particularly struggling and so is currently unable to go to school.

There are many (many many) professionals involved who all want to "support" our family. This is great in theory but much of this "support" consists of just coming round to our house for endless meetings and saying how hard it must be for us. We get so little actual practical help or respite.

My house no longer feels like a home, just a therapy centre and I'm expected to drop everything for hours and hours of meetings every week (even though I work full time).

AIBU to tell them to back off with the meetings and support? I feel like I'm drowning.

It sounds like a nightmare. I have been there with the multiple appointments per week, the sense that no one is talking to each other and your time is perceived as endless/expendable. Fortunately for us in some ways, the appointments were mainly in hospitals, though obviously that increases the time commitment.

I think it’s reasonable for you to start to explicitly manage these appointments. At the start we were so grateful and hoping for resolution. As it became clearer that some of them were of less value, I started to insist on phone/zoom/teams wherever possible and for my child (in nursery, generally little interaction unless bloods or diagnostics needed) to only attend if actually required. It’s taken a couple of years for me to get confident to insist but your time and your children’s time is valuable too. I can strongly recommend saying “I can only do this via phone or video call this week.” and “I’m afraid we need to rearrange as this won’t be possible with my meetings.” and practice a few other things that will help.

I have the same issues but the other end of the age spectrum with a disabled DH. He couldn't even be given the right sort of walking frame, despite dozens of physios and OTs seeing him. It's stressful enough, without the system conspiring against us.

Do you have a lead professional who could coordinate all this? Either through CIN meetings or early help. It does sound really difficult.

Yup I am mum to special needs children too and the help we need we are not getting but plenty of visits by different professionals with no useful advice or practical help.

I too dont get it when they say they are there to help when really all they do it sit down,i have to sit down and it takes time away from me supervising my children so their dad has to take over which he dosent mind of course but its like..where is the help its additional task for us lol

I used to get cross when meetings/visits were clearly last appointment of the day and the "professional" would manage to make the meeting last until knocking off time.

It would be difficult to have a lead professional when turnover in each of the partners involved is often high and they are crap at talking to each other.

I don't know how I'm going to do this for years to come.

I also, maybe wrongly, find it quite traumatic to go over and over their developmental histories, medical events, some of the worst moments of our lives, the tribunals, and the challenging behaviour details. I'm getting nightmares about it all.

Can you write a one page profile type thing to give new people so they can have the history without you needing to give it all?

i have a summary of his history and conditions and a list of medications which I take to appointments so they can have the information without wasting half the time going over the same old ground!

We do similar, with diagnoses, medications, allergies, names/contact details of all professionals involved, brief summary of important history. Professionals are always grateful for a copy rather than having to repeat things/copy things down.

I used to get cross when meetings/visits were clearly last appointment of the day and the "professional" would manage to make the meeting last until knocking off time.

I used to get cross, when one social worker always made appointments to see me and DD1 at 10 am at our house - so she didn’t have to fight for a place in their car park! It was well documented that DD1 has disturbed nights (and in fact, nobody is sure she sleeps at all, as her EEGs are so abnormal, they can only assume she must do); and rather than letting her sleep in; I had to get a stroppy young person up, washed, dressed and fed! It just added to my stress!

We do similar, with diagnoses, medications, allergies, names/contact details of all professionals involved, brief summary of important history. Professionals are always grateful for a copy rather than having to repeat things/copy things down.

I did that too, as I got fed up with repeating it all for every new consultant or trip to A & E!

I would suggest a multi agency TAF (team around family) meeting held on teams or zoom and make sure there are minutes and actions

I did the frequently asked questions sheet thing as well when mine were going through diagnosis!

As a pesky professional now (although I work with adults so people are usually just happy to SEE some bloody help - which is another can of worms and area of ranting altogether)... put your foot down and be a bit more "difficult!" You don't HAVE to accept whatever appointment they give you - yes, I'll start a phonically with a couple of possible visit slots in mind just so I don't turn into a blethering wreck mid-conversation, but if that doesn't work for you - even if it's just a "don't give us first thing - he might have had a bad night" or a "give us first thing so we're not waiting on you all day" - speak up! Likewise - ask them if they can double up and come as a couple of professions together if that will help - I quite often go out with community nursing so we're not taking up two chunks out of a family's day, or I'll go and visit elsewhere if it's more convenient or if they feel I'm likely to get a better response at school or college or day centre - or if they don't react well to visitors unsettling the home.

The basic information should be down on a single core information form on whatever system they're using - yes, you might find social care use a different system so you have to go over it a couple of times, but not for every bloody person that walks through your door - I'll make a point of looking and checking if ours has been done and just asking if I can quickly check a couple of the boxes that are likely to change if it's relatively recent because everyone's time is too tight to be gathering the same information again and again for the sake of doing it, and I've also usually pulled a general timeline out of the notes before I show up for a visit in terms of history. You might have to do a bit of rehashing when they move into adult services if transition planning isn't strong in your area - we can't access ANY paeds records whatsoever in my team and it's the bane of my life - but rehashing an entire developmental history time and time again isn't on... quick check on things like medication that it's up to date - fine, but going through everything as if you're a new patient - not on.

I hate the assumption that everyone has their entire time available to sit around waiting for professionals to run things at their convenience - we get bog all of that allowed in our team but none of our bosses have any tolerance for pulling that shite at all.

I completely empathise with you. I've just secured a large EOTAS package for dd and whilst I'm really happy dd will get what she needs I can't say I'm looking forward to having all the people invading my home. Secretly hoping that once dd has established relationships I can ask that they find somewhere for the teaching, support and therapies to be held outside the home.

I totally emphasise. My DD has a disability and we have suffered similar. I remember when a Psychologist insisted in visiting her at home (bringing with him his student to observe). They were sat asking us questions for ages (general questions not therapy). My elder son walked through the room to leave the house for work (only route) - lots of grumps and frowns from the professionals. Which is why I explained to them that this is our 'home' and what you get in a home not a meeting room. Thank god for covid when everything moved online.

That's the issue with other services. In theory they should work but there's so many that not can say this is the plan and it ends up a group discussion without much movement forward.

You have my sympathies op, it's a very frustrating process.

YANBU. I suspect they think they are helping, but I would imagine they'll be equally as relieved to have the time back if the meetings aren't necessary.

Perhaps they're trying to compensate for the lack of real provision, which really sucks.

I've done about 4 hours of meetings in the house this week and a couple of phone calls. I can't even think straight.

The first thing I've done is said no meetings next week. None. I'm not even going to do phone calls.

Then, I'll get my head straight and work through the rest of your suggestions.

@hiredandsqueak we're desperately trying to secure an EOTAS package for one of my DC - the only people who haven't come traipsing through our door or calling me up are LA SEN department, they've vanished!

I agree it is utterly exhausting and financially crippling. I don’t know the solution but something desperately needs to change. It’s literally tens of hours a month

Yes LA SEN dept either spout rubbish and hope you will fall for it or disappear into the ether. They conceded on the eve of Tribunal last week knowing that they would lose anyway. They used the wait for a hearing to save money though. I used Sean Bowers at SEN Action who I can recommend wholeheartedly.

I have been in similar position but as sahm it was manageable and I found it useful. More recently I have had to say no to an intervention that was not going to be useful. It was very difficult as I felt guilty for turning down an offer of help. I just had to focus on what DC needed and would benefit from.

Get as much as you can moved to telephone appointments. You’ll find they’ll wrap the telephone apps up quicker. Not all appointments are truly necessary, and it is just another huge mental/logistical load to fit in.

I say this, as a mother of a disabled child. Not to the same situation as yours by the sound it of, but we’ve had appointments booked in pretty much every week since start of March. It is a drain. I find I build myself up to the appointment, then I’m knocked sideways after it. It’s hard to describe the effect to other people.