Saturday, 5 April 2014

But she goes to school.....

As I wrote here, we have had huge problems obtaining the help, support and equipment we need from Social Services and the Health Service (but not the acute hospital-based services, or Jessica's school - they have both been fantastic).

Social Services and Health Services have clearly been clutching at straws to come up with reasons why they shouldn't provide us with what we need or are entitled to, even in respect of services that we have previously been assessed as needing, and were receiving up until December when Jess became ill. 

Some of the more classic lines they have come out with are:

But she is only 4

Other children don't get that

She is too medically dependent for Social Services to help

She is not medically dependent enough for the Health Authority to help

Well yes, technically our assessment is incorrect, but if we assess her correctly we then have to provide the service

We don't do that. Oh, are we really legally obliged to? I didn't know that

No we can't possibly do that. Why? Because we have never done it before

Yes, well I agree she needs two people to lift her safely, but once you get the ceiling hoists, she will only need one person to hoist her. Yes, I do know you don't yet have the ceiling hoists but that is not my department so it's not my problem

Well I agree she currently needs this medical input but we can't help you with it now, because she may not always need it

Where is her father?

And my favourite: She goes to school, what do you spend your time doing when she's there? 

All of these prompted exclamations of anger, disbelief or tears of pure frustration and exhaustion at one point or another. But the last one was the one that broke the camel's back and prompted the fuming email below. I'm sure this will look very familiar to parents with a child with special needs.

This is an example of 3 weeks from my diary: it is representative of our normal level of appointments, although obviously they change, for example there are no hospital appointments in these few weeks, yet in other weeks we may have 2 or 3 hospital appointments a week.

09:30- tour of place Jess could go to for respite
11:00- TAC meeting at Jessica's school

09:00- home visit from 2 OT's from Social services re major home adaptations
 9:30- home visit from rep re equipment for major home adaptation
09:00-17:00- have to stay at home to receive a delivery of equipment 

14:30- visit from architect re major home adaptations
 7:30- assessment from Outreach Hospice

16:30- home visit from school OT and rep to set up Jessica's new home chair

14:30- Special needs opticians
15:30- second assessment by Outreach Hospice

10:30- IEP at school

09:00- meeting with Social Worker
14:10- orthotics to be fitted for new AFO's

10:00- appointment with dietician and speech therapist re feeding

09:30- appointment at wheelchair service

0945- school open morning

This is my "to do" list for this week. Again, this is representative of the volume of administration I do on behalf of Jessica.

> *order repeat prescription from GP, ensuring that they have received all the recent reports from Great Ormond Street Hospital, our local hospital and the Community Paediatrician, and have updated their records accordingly, with new medications and drug dosages
> *arrange an appointment to meet up with a rep re equipment for major home adaptations
> *order Melatonin from Community Paediatrician and get prescription to be posted to us, as GP not allowed to prescribe this drug
> *send the OT a list of equipment that Jess had grown out of, and that can be collected
> *confirm time for appointment with Wheelchair service as they have sent me 2 different times and liaise with school physio so she can attend.
> *contact community nurses and request additional oxygen saturation probes
> *cancel a duplicate hospital appointment sent in error
> *start filling in DLA renewal form (a very time consuming process)
> *arrange and confirm nursery space for Anna for week after Jessica is due to have surgery, so can confirm surgery date with GOSH

> *contact Rett UK re info required
> *complete paperwork required for care agency we are using to supply help in evenings to get girls to bed
> *email school physio re Jess starting to wear her new spinal rigid brace
> *Re-arrange Jessica's appointment with special needs dentist as previously had to cancel as Jess had been admitted to hospital
> *arrange for technicians to go out to Jessica's school and fix wheelchair
> *fit equipment that was sent home from school by school OT onto Jessica's new home chair
> *chase ph study report from GOSH (this has so far taken 8 phone calls and I am still no closer- this report should have been ready for our appointment with consultant surgeon at GOSH 2 weeks ago, but hadn't been written up).
> *email dietician and school and ask for statements for the DLA form

> *photocopy all recent hospital reports for DLA form
> *email dietician with update regarding Jessica's progress with feeding (her routine is changing weekly at present while we build up)
> *order next months worth of nappies, ensuring prescription for next size up has been received (it hadn't last month)
> *make sure next months order for feeding supplies (pump giving sets, syringes, feed, ph strips is amended to meet our requirements
> *Contact school OT re new house chair as battery and brakes are not working
> *Contact school nurse to request additional nappies in our monthly allowance as increased feeding and hydration is meaning we are having to change Jessica's nappy more often.

This is all representative of how I spend my time- these are normal weeks. I am attempting to manage all this while also doing everyday things like laundry, grocery shopping, cooking, organising for the 
gas man to come out etc, while also caring for Jessica's very complex needs, looking after my other 22 month old child, and trying to ensure that both children have as "normal" a childhood as possible.

Hmmmm. What do I do when Jess is at school???! Whatever it is, I wouldn't call it respite.


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