So what do you do when you can't cut any more?

jay_dee

Melusine - you mentioned in post 35 about working as a teaching assistant. I work in part time in a school (until recently I worked 14 hours a week) - I work for 39 weeks in a year but my pay is spread over 12 months, so I get a regular monthly wage. Don't know if that information helps?

Soubrette

Melusine, does anyone know what causes the hunger for people with Prader-Willi? Would your son be entitled to any foods on prescription in the same way that people who suffer from coeliac disease?

Sorry for all the crazy ideas

Sou

boredofbeingathome

Hi and hope things have been OK for you today especially after the phone call from cccs. I can totally sympathize with you regarding your son's condition and your availability for work- as i am the mother of a child who was born with a bowel condition- requiring good diet, has had several other problems in her life and last year contracted type 1 diabetes as well. With app ts in different hospitals and support that she needs its a full time job on its own. I find it difficult to work and concentrate and be available for app ts- so i know exactly what you mean. I have found the old style thread is quite useful and my only tip on this would be to pick out specifics for you! I think you do a marvelous job, try and remain upbeat all the little things do help.

candygirl

JUst read through all the posts, and really feel for you in the position you're in, and all the previous advice is brill:D
However as a fellow dog lover myself, I have two gorg staffies, I think the £8 a week for food is way too high.Mine are on Wagg dry food(I also give them bits of the veggie stews etc that I eat myself on top) which costs £10 a month to feed two of them.I known they are smaller than your dogs, but no way should yours cost this much to feel per week.
Mine also have glucosamine tablets for their joints, garlic for deterring fleas(it does work!!) and carrots for their teeth.They are both in tip top condition, and I couldn't cope without them, so hate to think of you having to rehome yours, because your paying way too much off your debts on such a small income.:o

affordmylife

Just wanted to say hello and you are doing a great job.

You son is very lucky to have such a wonderful mum as you.

Do you mind me asking does he have special needs as well as PWS and what is the long term prognosis for him?

I only ask as I work in a special needs school with a PW lad of about 17 and he is continent and a very able boy although a little overweight who we think will be able to on to employment in the future.

I know that there are units in this country were PW young adults live such as a sheltered accomodation type of thing - is this only possible for some and not all?

I really dont have a clue so please dont take offence just asking x

Melusine

Going backwards again:

My son has PW but also had a stroke at or just before birth, which has resulted in speech defect, learning difficulties, incontinence. He will need 24/7 care for life.

Most PWs do not go onto full time education, not because they aren't capable of holding a job, but because of the eating. If you work in a shoe shop, who will stop you going to the sweeet shop next door? Who'll stop you pinching your mates' lunch boxes? Bosses will employ special needs people, but they won't guard them.

My son's day centre is attached to New Directions, a PW home in Robertsbridge. It's 40 miles from where we live, but thanks to Government cut backs is the nearest day care facility - although it is also the ebst for him, so not too many complaints. When he first went there, I had to take him every morning and bring him home each night. 160 miles a day. It cost more in petrol than my income. I asked Social services for help with it. After all, they made him go there, not me. They said - you'll love this - they couldn't pay me anything towards the travel costs because..... I was his parent and principle carer, and s such not allowed to "profit" from his care. Eventually, I had a mild heart attack and they had to provide a taxi. They asked me to hand over the mobility component of hsi Disability Livign Allowance to help pay for that, and were disappointed to learn the mobility component goes to a Motability car for us, so they couldbn't have it.

Tried dried dog food - actually Wagg's. Dogs refused to eat it. We persevered for over a week, but you can't starve them. We had to go back to tins. Meanwhile, son number 2 has come home tonight and said he realises he has left me in the lurch a bit, and he is going to take over the dog insurance costs. It won't hurt him.

Cccs told me to go bankrupt! I don't want to unless I have to. Instead, I phoned my biggest creditor and explained the situation to them. I told them I had been advised to go bankrupt. Seemed to concentrate the mind beautifully. They knocked the monthly repayment down from £120 to £50, to be reviewed in 6 months. That £70 is going to make a lot of difference.


PW is caused by a chromosome abnormality, and it's to do with the hypothalamus. You can't get food on prescription as it doesn't require sepcial foods, just a restricted diet.

And the PDSA doesn't do that service any more. It was abused by a few and the many suffer.

But I feel like I achieved something with the reduction in repayment. It's still big enough that the debt will come down visibly each month, but not so big I starve over it.

Melusine

Total monthly income £767.28

This is benefits for me and my son, and no longer includes the £30 a week my other son gives me in rent.

Outgoings (monthly) workd out on Martin's budget calculator

Home contents insurance 11.50
Water and sewage rates 20.00 (waiting for bills for exact amount)
Gas (direct debit) 28.00
Electric (direct debit) 45.00
Home phone (at present direct debit) 39.50
(trying to reduce, have you tried to play with BT?)
Food bill (includes all bought at supermarket, cleaners, wash powders, deodorants, everything) 216.50
Petrol 45.00
Contribution to taking son to day centre 32.48
(this used to be £80 + a week.)
Loans and cc payments 114.00
Respite costs 78.34
TV Licence 11.37
paper, pens, ink, etc for writing hobby 10.00
Christmas and birthdays (mainly grandsons) 20.00
Haircuts 5.00
Opticians 10.00
Paying back loan from my mum 30.00
(not negotiable)
Total to here: 716.69

Plus thinking of cancelling:
life Insurance 20.00
[strike]Pet insurance 48.00
[/strike]Cost of feeding dogs (2) 10.00

New total with these things: 746.69

Yay!

Will work on reducing food bill, but it won't be easy.

Burlesque_Babe

The £70 change by your creditor will make a big difference, good on you for re-negotiating.

Verbatim

Hi Melusine,

I think there's a thread about free money/increasing your income somewhere. Mystery shopping, competitions(you can sell the winnings) and of course matched bettingand free bingo. ss and james 240 plus many others have made loads at these. I haven't tried but I gather the important thing is to check you understand how it works first. It isn't betting and done correctly there's no risk. People will offer support and guidance and answer questions.

floss2

Melusine wrote: »

Cccs told me to go bankrupt! I don't want to unless I have to. Instead, I phoned my biggest creditor and explained the situation to them. I told them I had been advised to go bankrupt. Seemed to concentrate the mind beautifully. They knocked the monthly repayment down from £120 to £50, to be reviewed in 6 months. That £70 is going to make a lot of difference..

Great news about that reduction.....do you think the others would reduce if you rang them & told them what CCCS said?

Also, think about the advice from CCCS...they would not have suggested it if there was a way you could feasibly pay the debts off....but you are on benefits and as such do not have any spare income for repayments.

Glad things are looking a bit more positive