Hospital appointment rant!

Brummig

Sorry guys - I just need to vent!
My son (7yrs 5months) has autism and is still not continent at night. Last October I spoke to a Community Mental Health Nurse and a psychologist who both said they would sort out a referral. We heard nothing so I asked his hospital consultant in February who said he would refer, and we got a letter a couple of weeks later offering an appointment in 25th June. Unfortunately we have a family wedding on that day so couldn't make it so I rang straight away to change and got a date of 16th July (clinic is only held in Fridays), but as this was a long wait we were asked if we would consider a cancellation if one came up which I was happy to do. We got a letter on Saturday morning with a new appointment date for this Friday, with a note attached saying the clinic on 16th July is cancelled as the nurse is not available. Unfortunately we are away this Friday - out of the country for half term (typically we only finalised the holiday dates 2 weeks ago - I would have definately delayed going away to go the appointment!), so I rang them up again. Next available appointment is 9th July which I can't do - totally understand that is my fault. Next available one -10th September!
I know it is my fault too as there are dates I can't do - 3 Fridays in the whole year that I cannot change! - but I can't believe that it's so long! I know it's not life and death, just inconvenient - and expensive as we still buy bed mats regularly, wash lots of bed clothes all the time etc. What happened to targets. We don't have any social services involvement as the diagnosis went through school and Ed psych.
Sorry - as I said I just needed to vent!

kingfisherblue

Your GP should be able to arrange nappies or pull ups for your son -or ring the hospital and ask for the paediatric continence service (not all areas have one though). In the emantime, put yourself into holiday mode and enjoy your break.

Oscar_The_Grouch

Hi there

Sometimes it's good to "get it off your chest".

Are you claiming DLA for your son? If not, you should be. If so, then have you mentioned the bedwetting to them and the fact that this means you have to get up in the night and deal with cleaning in the daytime? This may be a factor to increase your DLA and help pay the costs until he gets treatment or grows out of it.

Are there any other hospitals that you can go to? If they are only running the clinic on Fridays, are they running it on other days elsewhere? See if you can find the name of the specialist and get in touch with their secretary. They may be able to arrange something for you - a private appointment may cost you £50, but it would get you seen quicker (plus you can then switch back to NHS) and must be cheaper than doing all that washing. I know it seems like paying a bribe to the doctor, but if it works.......

Hope it all gets better for you.

Molly41

They have met their targets - they have offered you earlier appointments but you cannot make them. It is a question of prioritisation.

KeaneFan10

If he is only incontinent of a night why does he need nappies i presume this is what your asking my son Thomas is 12 has severe autism and in nappies day and night, the school nurse arranged our free nappies but it doesn't happen over night we waited 12 months, I am not sure why he needs these nappies if he can control himself in the day may be he needs pull ups rather than nappies surely this wont help him learn too use the toilet ?

kingfisherblue

In my area, you can usually only get nappies for overnight - pullups are for daytime use.

longhotbath

in this area, a 7 year oldwith a continence issue would be in pullups at night - especially if walking and dry during the day. A 7 year old would only be in pads (the pc name for nappies) if unable to stand or assist in changing.
Putting a 7 year old in pads (nappies) at 7 is telling him that you are expecting him to wet the bed - with or without additional needs.

I am assuming you buy disposable bed mats - I have 2 washable ones - bought from boots which havnt not absorbed everything yet.

If you are not able to make the offered appointments, I would suggest going private for the initial appointment. If you wait until september, you are sending the signal that you dont see it as a problem. Or have you put yourself forward for another cancellation?

ps I have a 7 year old who is incontinent day and night....

Brummig

Thanks for the advice guys. I have said we are happy to take another cancellation, and I totally agree they have offered us an appointment in July that we were unable to take so it's our fault really. As I said I was just frustrated by the f***up fairy rather than the hospital!

He is continent during the day, although not til he was well gone 5. It took a lot of hard work! Nights however we have never cracked and we can still have 3 wets in a night. We have a mixture of washable bedmats and disposables because we don't have a drier so the house can be filled with wet washing in winter. I also have an awful lot of bedding!

I think I let it get to me because I am really tired at the moment as we have had a bad run the last couple of weeks (not what you need just before 10 days camping!). I hadn't gone to the GP as for a long time I felt guilty taking up an appointment for it.

I know there are a lot worse off than we are.

kingfisherblue

Brummig, have you ever applied to the Family Fund? There are conditions to meet, such as income (I think the maximum for this year is £25,000), but it is worth contacting them. If you qualify, they can supply a tumble dryer with a five year warranty. Also, you usually get more items in your first application. You can apply every year (online after your first year, if you are applying for the most popular items - much quicker than the forms, and you hear within a couple of weeks instead of about three months!).

www.familyfund.org.uk

jenheiffer

Why couldn't you go on 9th July?

jennie-jack

my son was a very heavy setter due to the tube feeds he got at night. we used to use washable mats from boots then a disposable nappy with a cloth nappy over the top.

my son was on the small size so fit into a large wrap.

jen x