Hi - I know it seems to vary across the country but I was wondering whether anyone could offer advice on how to go about getting some respite? I've asked my GP, Health Visitor and CCN but no-one seems to know anything about it - my CCN suggested Acorns of all places, I almost said 'he's only got a trachy'! Do some areas have people to help during the night? Luis is almost 2 and we could really do with a good nights sleep! To be honest I'm not sure if I could let someone else look after him but it would be nice to know what's out there.
Many thanks - Helen
PS I never got round to saying a huge thank you to everyone who offered advice on Luis' feeding problems last November. We tried all the tricks you suggested and as of this week he now has a gastrostomy which will hopefully see a change to his oral aversion. Thanks again x
4 comments:
Hello Helen,
I don't know where you live but respite is something that is definately still a postcode lottery. Even worse than that as I know of two families living in the same county who have different support as far as respite is concerns and they have other medical problems. One gets 3 hours a month and the other more.
Even as you say, you are not sure that you relly want it, but it is nice to know that the offer is there. I think it is something you should investigate so that if (heaven forbid) you were yourself ill or in hospital you would have peace of mind knowing that there was someone available that you had confidence in to trust with your child if needs be. A parent of a child with a tracheostomy needs to be assertive would striving for the rights of a quality of life for them and their child.There are different independent schemes in different areas,for example Crossroads. Where I live there has been a Breaks for carers programme for a few years, which since the new government initiatives following the Every Disabled Child Matters Campaign has increased. Yes respite is difficult to obtain but I would suggest that your community team are playing ignorant to save them the hassle. I suggest that you go through Every Disabled Child Matters and find out exactly what respite facilities are available in your area. Be guided by them.
Hi Helen,
The best place to start is probably Social Services, you may have to refer yourself. A Social Worker will then visit to assess your needs. You need to try and ask for a Core Assessment, this basically just looks at what support you have, what you need, and will then suggest ways to address any gaps noted. There is also something called a Common Assessment Framework, we've not had one, but I think it is linked into the EDCM campaign.
We've had a varieity of respite - Health Care Assistants in the home when Dominic first got his trachy, this was in the day, and meant I could get stuff done in the house, visit the shops, go to the gym etc. We've also had overnight help, from nursing agencies, but again health care assistants. This wasn't very successful, as I was never that happy with the staff from the agency. Shared Care was also suggested to us, but we have never used it, this is where you send your child to another family for a night or two off.
We also accessed the local Children's hospice for a while too. Dominic was on CPAP, oxygen, feeding tubes and a trachy, and this was the best option for us. They are at least staffed by nurses and have wonderful toys. If we hadn't used this, we would have had no respite, as it took a year for a care package to be set up! Dominic no longer goes, he's only got a trachy now, so is too healthy.
Now we have no respite, but Dominic is at nursery from 9-1 three mornings a week - lovely! He also sleeps very well, and we never get up to suction him, unless he has a cold. I'd stil like some help in the evening, so my husband and I could go out for a meal, there is no service that fits this need locally. However, I am feeding into the current review of respite available to parents that is being completed.
Hi Helen, where in the country are you? I know some areas are pretty scarce when it comes to respite care. we have always been lucky, our CCn team have always provided competent care assistants. Initially we got 3 hours per week, now sam is in school full time we get 4 hours per month in an evening so we can get a night out together. we also get 4 hours per week during school holidays.
There are options available to you, as Laura said, social services is a good place to start. There are also crossroads and take a break in some areas. Another thing you could do is look into Direct Payments - not sure how this works, think it is linked to DLA, you choose and pay for care that way. Acorns was also suggested to us, but we felt it was a little too much for us to deal with! Also, try Luis's paedatrician or the ENT department who did the trachy. Good luck! and glad to hear about the gastrostomy!
Julie x
Hi,
Just wanted to add a note about Direct Payments.
An assessment was done by the social worker and they were the ones who organised the funding.
I was funded for one over night stay a week. It was up to me who I hired.
You open a bank account specifically for Direct Payments and the money is paid directly into it from the council. All start up costs are funded, ie. for insurance, advertising, training, etc.
I chose to hire my mum. Lucky she was a retired nurse. It meant that I got a proper nights sleep as my son went to stay at his Gran's. It also meant we didn't have to wait around for CRB checks and training.
I hired a payroll service take care of the fiancial side. They told me to whom I was to make a cheque out to and for what amount.
If you want to do that side of things yourself there are employer courses you can do.
Hope that's of some help x
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