To "use up" a home start volunteer for myself...

[Bathsheba]

3 months ago I was really ill - I had bi-lateral (used to be called double) pneumonia, and swine flu, all whilst being 7 months pregnant. I was very ill but they wouldn't admit me to hopsital or give me anything other than standard gp care etc...

While I was ill I contacted my midwife and HV because I was in a position where my DH needed to go back to work (and go abroad for a number of days) but I couldn't look after my children - I was too ill. They looked into various options for me including Social Services Childminding but in the end my Dh was able to take 2 weeks dependants leave. However, at this point my Hv referred me to Home Start so that I would have some support if anything like that ever happened again.

I have since had my baby and I'm almost fully recovered from my c-section but my Dh is off back to work on Monday. I have 3 dds - 1 is ages 6 and at school full time, DD2 is 3 and goes to playgroup for 3 sessions a week and DD3 is 3 weeks old and is yummy.

The Home Start Co-ordinator phoned and said they now have a volunteer for me who can come and see me for a few hours a week and either give me a hand round the house, or look after the baby etc while I go and have a shower for example.

I feel really torn...I guess I'm a fairly typical middle class SAHM - my DH comes home every night (often at 6:30 - 7 but he is here every day apart from the odd business trip abroad) and my Mum is local. I also have a cleaner for a few hours once a week, which means the place isn't permanantly like a show home but it means that the bathrooms etc are regularly cleaned. I drive and have access to a car every day so we get out and about and I can take the girls to their activities. They have extra things like tennis lessons and ballet which, yes its sometimes a bit of a hassle to take them to, but at the end of the day these are optional things we have chosen for them to do and really I can't complain about them...

However the idea of someone coming round so I can have a LONG shower during the day, and maybe get a chance to tidy the bigger girls's room sounds fantastic - when my Mum is round I don't really do those types of things because she is here with me and we do things together....although I'm sure she'd watch the girls if I ask.

I had PND after DD1 was born, and PTSD after DD2 was born, so I can see why my HV is keen to surround me with support, but I feel a fraud taking a much needed volunteer away from possibly a single Mum or someone with little local family support, or a Mum without the opportunities I have.

The Home Start Co-ordinator is coming round to see me on Monday afternoon to discuss things and I'm really wondering if I should embrace the opportunity and say thank you, or if I should really explain that I feel a bit of a fraud and I understand her volunteers are like gold dust and someone more deserving really should have this volunteers time rather than me...

By Kathyjelly Mon 08-Feb-10 09:41:

"We've had one night out without ds in last seven months."

The night out isn't the big issue, though, is it...just like the long shower isn't for the OP.

Riven its crap you are not getting respite. I cannot for the life of me understand why.

Is there any Link project in you area? Before we moved and DS got placed with us we were being assesed as Link foster carers. It was through LA but other agencies were doing it Barnardos was one of them I think.

It wasnt 'care' , we were to have the same child on a regular basis for overnight or weekend stays. So not like having to dump your DD in care just to get some bugger to listen to you.

I am guessing you have probably looked into this but just in case...

Bloody hell Riven its such crap.

When DC5 is old enough I am going to reapply to do Link respite.

Cos of OH's MS we have an accessible bathroom already and by then we wouldve probably moved our bedroom downstairs so we should be set.

I hope you get some support.

The annoying thing is that there probably is the help you need out there but from different sources and services are still so bloody disjointed.

As I said - crap.

I know Riven.

We are not in the same position as you but similar in that our situation is pretty tenuous.

I am actually terrified of the Tories getting in.

If they feck about with top up benefits and DLA we will be in huge trouble. OH wouldnt be able to afford to work part time and cant work full time.

If he has to give up work I would have to ramp up my hours to full time and
he wouldnt be able to cope with looking after house and kids (DS has SN so has quite a lot going on). If he had to it would make him ill and of course I would then have to give up work to care for him.

I wake up at night worrying that we will all end up on benefits with no hope of ever getting off them

I wouldnt complain about our lives now. We are fine and I think we have been very well looked after under labour. But its all so fragile. I would so much rather be totally self sufficient like we were before OH was dx and DD got sick.

As for the short term thing. We had to fight to get finacial support so we could adopt DS. Even though it would have cost £800 a week at the time to put him in agency foster care. And he would most probably still be there 6 years later!

Does your local hospice (I know we all hate that word) offer any respite? We are lucky that we have one very close and a lot of the families I work with use it regularly for their children with complex needs.

I am sure you have exhusted all avenues but just grasping at straws here.

Do you think most people know that children's hospices get no funding?

I doubt it myself.

WRT to Riv's statement about supproting peoplewith homestart being cheaper-

it must be 7 years ago but IIRC we were ten timesmore value formoney than SSD.

That's a lot; clearly we couldn't doeverything theyc ould but you still ahve to question why HS's are being allowed to go under

If you aren't deserving I don't know who is. It disgusts me the way parents have to practically beg for help, it really does. A family at my boys school got free bikes because they couldn't be bothered to bring their kids to school on time FFS!

The new criteria round here is a bit of a joke. You wouldn't qualify for overnight respite here either riven as they would say that you can sleep in the day as dd is at school (who knew school was respite, hey?) but someone with a younger child not at school would. So it's not just done on disability of the disabled child but the opportunities that the parent/ carer has to have a break from the child. I guess your situation is further complicated by the fact that your dh is down as the carer, not you, and that's something else here: if there's more than one parent involved, it cuts your chance of respite because you can 'take turns'. Single parents are considered more at risk of burnout.

They're still not taking away your current respite though, right? It's just the extra they're refusing?

I don't think money will be cut only if the Tories get in tbh. Whether Lab,Lib or Con, budgets are going to be cut everywhere.

BTW I volunteer for Barnardos in an almost identical scheme to Homestart and tbh I go wherever they tell me the need is. Leave it to the co ordinator to decide whether the OP really needs help.

We never got any respite with ds1 even though he never once in his life slept through, as we supposedly could cope.

Riven you sound like an amazing woman. I can offer very little as regards help just to say that a similar but different situation happened to a friend. Her husband had a chronic illness which was in it's end stages. He had always been adamant that he wanted to die at home and they had a really good care package HOWEVER as is always the case SS and the NHS started to argue about who should pay for his care and in the end SS threatened to withdraw all of his care (despite the fact he could do nothing for himself and they had a 7 year old DD). Anyway we tried writing to MP's councillors etc etc and in the end we decided the only thing to do was a bit of public shaming. We got the story plastered over the local press repeatedly and even got it on National radio and newspapers. We were generally a complete pain in the arse to people who made the decisions and shamed them as publicly as possible. Amazingly enough politicians don't like negative publicity and after several months of banging our heads against a brick wall they caved in . We just made an absolute nuisance of ourselves. I don't know if that's any help, but if you need any help I'm sure there's any army on Mumsnetters who would happily letter write/stamp their feet/scream and shout on your behalf.

See I thought the point of respite was to help enable carers to live a 'normal' life.

How is sleeping during the day promoting normality?

We are all supposed to live some sort of twilight existance and siblings, relationships are supposed to go by the by.

There is NO conception regarding the amount of admin having a sick and/or disabled child entails.

I STILL get panicky when having to arrange any sort of appointment now. It was so bloody complicated when DD was alive and I had to fit hers, DS's and the rest of the normal stuff in, the feeling of panic has never left me.

Particularly as every professional involved seems to think their time is more important than yours or anyone else involved in your child's care. The amount of times I heard 'well I am very busy, its the only time I can fit you in' even when I had told them DD had a chemo appt!

I agree, chegirls. But my council has drastically overspent on its social care bills, to the extent that education money is being cut and respite pretty much frozen. Their rationale (probably fairly) is that their new respite criteria should be for those who have no help (from partners or otherwise) and get no break (chid/ relative doesn't go to school etc.). I'm not saying I think it's right, and I know how much paperwork/ admin/ phone calls are involved with J. But I guess single parent who has disabled child who doesn't sleep at home with them 24/7 probably does rank higher in need than pretty much anyone else so I can sort of see where some of their new criteria comes from. A child who attends school is a lot different to a child who is never apart from you. Adult support is better than none.

But that's my view, and it doesn't make it any less shite that there's not enough money to go round for everyone to get the respite they need to enable them to live a normal life. It's just not a financial reality in these messed-up times. This is the problem - it's so subjective, but decisions have to be made. I guess that's why I made my original reply; I am well aware of the scarcity of funding in respite-related areas, and so think it should be reserved for those who need it most. It's just I guess we wouldn't all agree about who that might be!

I dont disagree with you about single parents having more need giveme. There are always going to be families that have less built in support and may have more than one child with complex needs.

But that knowledge doesnt make it any easier for others.

But I know its not a perfect world where everyone who needs it gets it. Working out who needs it most is a pretty impossible task to get right. I wouldnt want to have to make the decisions.

In our case I wouldnt have accepted it because our situation was very unlikely to be long term (well longer than two years). So although we had very high needs ,respite wasnt really appropriate for us.

There is no way on earth I couldve left DD. Not because I am a better mum than those who would, but because her illness was acute and she was either going to get better or die.

I did it for two years and cannot imagine being able to keep up that level of adreline and stress for years and years.

Really sorry about your dd, chegirl.

Thank you