to not see a way out?(38 Posts)
I am totally desperate at the moment - just got back from the job centre and I simply do not know where to turn. Sorry this is a bit long.
My 7 year old suffers from acute chronic constipation and this is causing him to soil himself slightly - think large wet fart - multiple time a day. He has been given different medication now and on Saturday he soiled himself 17 times. His school will not change him and clean him up when he soils - if he was classed as incontinent then they would be able to get 1: 1 support but as he is not they will not do anything. He cannot go without being cleaned as he gets sore and he smells.
The consultant said his case is so severe that it could take 3-6 months for him to be fully stable and may have to take medication for life. I am completely happy with the medical care he has received.
The school has said that as this should correct itself within 3-6 months they will not start the process of getting support without an incontinence diagnosis as it would take so long he may be better before it is agreed. So currently they call me and I go and change him - yesterday it was 5 times.
So far there are no problems.
But I had to give up work a year ago because my Mum was diagnosed with cancer and she looked after my younger child - I was unhappy in my job, did not really want to put my daughter in nursery and my Mum was really ill so I decided to take time off and return when things settled. My Mum is much better now and no longer needs help.
At the job centre they have told me that now my mum is better I must start looking for work and take the first job that I am offered - I tried to explain that right now I have to change my son 5 or 6 times during the day but they have said this cannot be taken into consideration because he is not disabled so I am not a carer and he cannot be too ill as he is at school. Therefore I must spend 35 hours a week looking for work and take the first job I get offered.
Last week I had to attend a job club course - I had to leave mid morning, lunchtime and mid afternoon to change my son so they told me not to go back. The job centre have now told me I am being sanctioned for not attending for 28 days - they are booking me on again and if I do not attend I will be sanctioned for a further 3 months.
I have spoken to the school but they said they cannot help - the Head Teacher even suggested I looked at my sons diet and make sure he is eating enough fibre!!! I was so angry I have never come closer to hitting someone in my life - does she really think I would be putting my child through all this if it could be helped by buying some prunes.....I mean really!!!
The problem is I think my Job Centre advisor is thinking the same - even though I have a letter from my consultant she assumes he is not eating properly and everyone gets constipation sometimes - it is not a major problem.
All I need is some time to allow the medication to work and my son to stabilise - he is getting all the right medical help, I understand the school position on this being temporary so why can't the job centre appreciate this - I am quite happy to work in a few months and to spend this time looking but I just cannot manage it now. I do not understand why looking after my Mum was considered caring but this is not.
I am being forced to have my money stopped for months or leave my child sitting in his own s**t - I do not know what to do or where to turn. (before people ask his Dad is not in a position to help at all) My Mum is back at work and all my family work so whilst I can get people to go and change him on occasions there is no one who could do it as often as he needs.
I have worked all my life until my Mum got cancer, so do all my brothers and sisters, so did my Mum, Dad and all my Grandparents - this is the first time any of us have claimed benefits and we always thought this was a safety net for times of trouble and we get this.
Contact your local MP, I think they would be able to help in this very specific case of being stuck between a rock and a hard place.
I'm cross for you! What a nightmare.
I hope your son feels better soon.
That's horrendous. I don't know what to suggest but you have my sympathy.
I would apply for jobs and if you get interviews tell them the truth about your situation.
Fucking Job Centers. And fucking jobsworths in them.
Sorry, but bloody hell. No helpful advice OP, just
Surely your son is elibgible for DLA as he needs significantly more care than other children of his age? Which would then entitle you to carers allowance?
Such a crappy situation to be in op. Go to the docs and any other professional you have dealt with regarding your sons situation and get letters from them to confirm this is the case. Letter from school and gp, im sure theres someone that will be able to help you out. And if the letters are not good enough for the job center then go further about it, whether it be someone above the person you are dealing with or even further.
OP is your son not eligible for DLA and you for carers allowance?
What an awful situation. I agree with that others say look into dla and carers allowance
It is a shame the system is so rigid, but unfortunately if you are not actively seeking work then you cannot be considered a job seeker and do not qualify. It seems a carers allowance would be most appropriate for you, but I can see what they are saying with it potentially being a temporary condition. I concur with PP about writing to local MP to see what can be done. You need some financial assistance but I don't think JSA is correct for you.
Awful situation. Could your Mum be the one to help your son now that she's better?
Sorry about the rant - I was pretty upset - I have been to collect him from school and feel a bit better.
I can apply for DLA but to qualify the condition has to have existed for the previous 3 months - which it almost has and be expected to last for at least another 6 months which is where it falls down for us - and I cannot get carers allowance unless he gets DLA. I can start the process but he may not qualify. My Mum did not qualify when she had cancer for the same reason but the job centre accepted I was caring so I did not have to look for work.
Ultimately i know I will be OK as my family will not let us starve if I have to be sanctioned but it does not seem fair.
Could you pop in and see your own gp? Have a chat with them and explain everything, they're usually quite helpful. Your GP an 'sign you off' at 4 weeks each time, during which you're not available to work and do not need to search for work etc. GP can do this for 26 weeks and if still ongoing you will be moved onto ESA. Hopefully by then things will have settled down and you get a chance to breathe
Your GP could sign you off with stress or something
Op, as your son is seven now, is there no way he could learn to clean himself? I mean that sensitively but could you teach him?
How old is your dd? I understood that you are not obliged to attend work related activities until youngest is 5. Why can your dp/h not cover some of the school attendances?
OP this sounds so tough. I can understand the strict parameters of JSA as you aren't actively seeking work or in a position to accept it.
As the consultant is saying treatment can be 3-6 months can they not focus on the 6 months part so you can get the other benefit?
You need help with the DLA form. My mam got it for cancer a 2 year award not under terminal rules.
If you have a local citizens advice they can appeal the sanction.
I'm sorry by the way that is extremely unfair off them.
Thanks for all the comments - unfortunately I am not on jsa but Universal Credit and you have to work full time - non of this 16hr stuff - when your youngest child reaches 3 - in a couple of years it will be 1. My daughter is 3.
I have chatted to family and frIends now and it seems one of the other issues with UC is you are totally at the mercy of your personal advisor and their interpretation of the rules and as they are all new to it they are all making random decisions.so I will appeal the sanction.
I am also going to see my GP and get signed off with stress - it's not really true but should buy me enough time for the medication to start working and hopefully the soiling will reduce to a level I can manage with family support and him doing some himself.
Bizarrely I do not want the extra benefits DLA would give me or 1:1 at the school and I do not want to get signed off sick I just want a couple months to sort my son out myself.
I think you should check out the link I posted, you do not have to work 35 hpw. Also you should Appeal your sanction! DWP are losing the majority of appeals. I'm sorry you are going through this, as uc is new I'm sure job centre staff are making it up as they go along! Good luck with the GP
If your son is 7, unless he has additional needs, why is he not cleaning himself? I don't mean to sound unsympathetic, but surely he could manage some wet wipes and clean pants, dumping the dirty pants in a bag to bring home?
I think you should try for DLA
Then you get carers but you will also be entitled to income support so no requirement to find work like JSA.
Ask for advice from incontinence charities with filling in the forms.
Speak to your consultant and ask them if they'd support a dla application. You might find they will on the basis that they think the situation is ridiculous and be happy to give you a factual back up statement of what your DS's issues are.
You need to contact your MP ASAP with everything you have written here.
Could you are him a special clean up kit you keep at school so he can do it himself? wet wipes, clean pants etc?
Would a sanitary towel in his pants work to contain the mess maybe and make cleaning up easier?
It sounds really hard OP, I hope you get it sorted
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