Profound/Multiple/High Needs thread

[MareeyaDolores]

That's it really. Am going to butt out now, but be warned, I may gatecrash occasionally (bringing [biscuits]) if no-one remembers to invite me in for a [tea]

DD comes into this category mareeyadolores.
Have been out all day visiting a new respite centre that DD is going to use. Have been getting to know some of the staff. It is a privately run affair but we have managed to get CHC funding and fend off the PCTs desire to send her to some 'unit' that they said could meet her needs and we wouldn't send her to

mega strike out fail there!!!

Some links I've come across for DLA-related matters, but not had anywhere suitable to post
Summary for MPS, one for heart
Blue badge under age 3

and of course, the indispensable cerebra guide to children and DLA forms.

I'm unsure if we fit here, we may do, DS has a few medical, neurological and physical issues.

Like devient (please don't go ) I may not sure we would qualify. We have 2 DC's who both get CHC funding. SS can get lost
Everyone says they are complex but they are our kids, we just get on with it
But I think this thread is a good idea.

2old DD has CHC funding too. Unfortunately the package is 'managed' by SS on behalf of Health,so I still have to deal with them! The Case Worker has postponed our appointment twice in the last week! (having already had 2 months off sick!)
The District Nursing team who have just taken over 'responsibility' for DDs care (from Childrens Community Nursing Team) are well out of their depth. They seem to be ignoring my calls as they haven't got the medical equipment we need, or the skills that we need them to have - so avoiding me seems to be their best tactic! In fact it seems impossible to find anyone in adult nursing who will own up to having the necessary skills to carry out procedures that I have been doing for years (and I have no medical background), so I cannot get our respite workers properly trained up.

I have a very big log/diary already and we have only been in Adult services 3 months.

bigbluebus I am gobsmacked, but have always felt SS are a waste of space.
Our community team are fantastic but as I am a paediatric nurse and midwife I can stand my ground. Have no problem in getting equipment.Mind you I doubt it will continue so smoothly in adulthood.

Where on earth are you? I think you should complain loudly to SS. Keep up with your diary.

2old Fortunately I have the necessary medical equipment as I still have the machine supplied by children's services and won't be giving it back until I have another one supplied by adut services and they want it back! It is essential equipment in daily use and I asked the adult team last October to supply me with a replacement. It should be funded through the CHC package.
Never had any problem getting equipment in childrens services, but the adult system has not yet adjusted to this new group of children with complex health needs who have survived into adult services. We live in a rural area, so DD is probably the only young person in this category on our District Nurses case load - so I think it is a bit of a culture shock for them, and the systems for provision of equipment and supplies are not set up the way they are in childrens services. Likewise with certain medical procedures. They do not, for example, know how to change a Mic-key button as I guess most adults who have them live in nursing homes and don't come on to their caseload.
How long have you go to go before you move into the big bad unprepared world of adult services?

Hello all, I think we belong here! We have a CHC package and a lovely DD who has complex medical needs and requires 24 hour waking care... Aarrgggghhh! But she's lovely. We have a long way before the scary transition to adult services ( DD just turned 2), but I feel for you bigbluebus, things are hard enough without someone laying obstacles in your way.

DD has had ( touch wood so as not to jinx ourselves) a surprisingly hospital free winter, I think thanks to a) not mixing with others especially kids, b) daily antibiotics, c) bipap ventilation at night to keep her chest clear. It's been lovely to be at home for a stretch. Our special needs HV thinks I am doing her a dis service by not mixing her with other children. This comment , made on several occasions, angers me still now. She has clearly never been in an ambulance or cleared out of the resus cubicle at hospital as they do an emergeny intubation. Gggrrrrr! Anyway enough of the anger.

I am sure as I am so new to this I am just going to lurk and pick your experienced brains from time to time, so thanks for starting this thread mareeyadolores.

Hi Toots. You will learn to just ignore the "well meaning" comments of so called experts and not take them personally. You are the person who decides what is best for your child and your family.
We have never kept DD away from other children - was virtually impossible having a younger brother, although she was a lot more robust when she was younger. However, I did know a family who had a SN child the same age as DD, who de-registered him from school as they felt that he was constantly ill from infections picked up in the school environment. It was what they felt worked best for them. Their life, their choice.

Thanks bigbluebus I keep thinking I am strong enough to shrug them off but some of them still burn! We aren't sure if DD has immune problems also.. Or if its just her lack of back up power that means she gets hospitalised by a common cold. I am planning to start taking her to a portage drop in session in April or May once a week and work slowly forward from there. I look forward to it and dread it at the same time! We have worked hard to create a safe nurturing calm in environment for our fragile DD and now we need to move on.

I am also starting the scary task of finding a suitable nursery or pre school for her. The local SN school look great but takes kids of varying abilities, needs and mobility. I feel DD would be lost there. So I am trawling that Internet.

toots DD started at an 'assessment' nursery attached to a SN school when she was 2 1/2. She was very vulnerable as she couldn't even sit up unsupported and it was a very mixed ability group. However, I have to say she was very well looked after. She stayed on at that school and is still there now in the 6th form.

bigbluebus DS was 14 in September so we are just starting out, fortunately good friend's DD is 16 so will watch carefully. DD is 7 so by the time she is 14 I expect things will be even worse

Toots hi. as big blue said ignore the knowall professionals she is your daughter. People have no idea and they should butt out,
BTW DD has an immune problem and it was 2 years before anyone listened to
me and I am scarey

Thanks both of you. How did you get the immune problem looked at 2old? Our consultant was very vague about it and just kept repeating that the tests were very invasive.

Bigblue any progress with the district nursing team or training up the respite workers? I thought the training would be the responsibility of the agency providing the carers? When DD came home with a bipap ventilator it was upto the agency (funded by CHC) to ensure they were all proficient and upto date with their training. (although one of them must have nodded off at the back of the class as she seemed surprised by the alarms going off when DD pulled off the mask)!

We are in the process of looking for a new car. We currently have a 3 door sporty thing- ridiculous! Especially now DD has a postural support buggy which takes up the whole boot. Everything else has to squeeze in the car around us. We cannot wait for the DLA high rate mobility to kick in at 3, so we are squeezing our belts tightly and looking for a big cheap wagon. Oh the glamour!

toots the agency came up with some ideas about who could train their staff - but they weren't the right people, for various reasons, so I gave them some other suggestions. They have got someone in the PCT to agree to do the training - it just hasn't happened yet!!!
I am waiting to meet with our new Community LD Nurse the week after next to sort out what is happening about District Nurses (and have also bent the Social Care Case Worker's ear today too) so hopefully something will happen soon! I delayed the meeting for 2 weeks so they could meet DD who will be on 1/2 term as I am fed up with them trying to sort things out for DD's life when they haven't even met her (no-one seems to have told them the mantra "no decision about me without me!").
3 door sporty car sounds lovely - but not the ideal family car! We got a people carrier once DD qualified for the Motability scheme (which was at 5 years old in those days). It was the only car I could get her wheelchair/buggy into without having to collapse it. We are now on People Carrier number 4 (although this one is wheelchair accessible, as I can't lift DD any more). It is great for fitting all DDs equipment in when we go away!

2old.Where our Transition plan failed was that no one from Health got involved in any of the transition meetings either from Children's Services or the Adult Health Team. Social Care had a Transition worker who came to the review meetings, but when he did DDs referal to Adult Social Care on her 17th birthday, no one did anything with it until 2 months before her 18th birthday - nowhere near enugh time to carry out assessments and get new services in place when the Young person has as many complex needs as DD.

So if I were to give one piece of advice, it would be make sure that all the relevant agencies are present at the annual review meetings where the Transition plan is discussed (or at least at the age 17+ one, as long as that is well before 18th birthday) - even if you have to invite them there yourself!

bigblue Thanks for your advice I will pass it on to my friend. It has been suggested that DS goes to a SENSE centre but will be a long journey 40 miles away. Am a bit concerned as SS have no involvement but Sensory Support have very recently shown interest. DS is lucky his b/day is 1st Sept so he will not leave school until just before he is 20.
Well done for keeping hold of equipment.
Can't believe a district nurse cannot change a Mickey, knew child 11 who changed her own!

Toots Good luck with the car hunt always double the amount of space you think you will need. We now have a Mini Bus and it is still packed to the roof.
Re DD's immune problems she has Emmanuel Syndrome, I have been banging on for over 2yrs about it and was ignored, she went into hospital Oct for a colostomy (strange lady bits ) and a paed, not hers asked if she had had any immune tests. Upshot we are now under GOSH and she is having
weekly infusions of Gammaglobulin
Good luck

2old DD is an October birthday, so in a similar position to your DS, in that she will also be nearly 20 when she leaves school. I am so glad that I haven't had to think about an after-school placement for her on top of all the other changes we have been going through! Although we are hoping that she will be able to go to a SN college that is about 18 miles away, otherwise the alternative is a SS Day Centre .
The difficulty has been finding suitable overnight respite care. We are lucky that she still has this year and next at the children's hospice, but after that we leave their care (unless her condition deteriorates significantly in that time). Once again, the care systems in Adult Care do not match up to the level of care in the childrens sector. The environments are totally uninspiring and unstimulating and the staff ratios are scary!

Oh it is all so depressing please keep me updated if you don't mind.

Sorry to depress you 2old, I didn't mean to. I have talked to other parents around here whose children just have LDs and most of them say transition has been good for them (although some of them weren't getting very much in children's services so anything they have been offered now is a bonus). The stumbling block in this area seems to be the complex health care needs. I have seen childrens health services come a long way since DD was born here, sadly adult health services don't seem to have moved in the same direction .