When_a_Mothers_Love_is_Not_Enough/

[jol]

iplayer link to the programme When a Mothers Love is Not Enough/here

[val]

Thought the programme was generally very good although would have been nice to see some positive stories etc - but guess they wanted to portray the negative as that 'makes a good story'.

I did think what David Cameron mentioned about having a passport to services was a good idea.  I don't know about everyone else but, especially in the early days, we found ourselves endlessly repeating the same things to numerous people.  His medical notes, again, like many other kids I'd imagine, were massive and so did not get read.  In the end we typed up an A4 sheet summarising the main points which we got put on the front of his notes.

The passport idea is something relatively straight forward that perhaps the learning to change group could initiate.  What do others think?  Is it already available in other parts of the county/country?

Val

[jol]

i think that once a child's 'pain' issues are dealt with, and a pattern of sleep/eating and suitable help and respite, is in in place, then it is possible to see positive examples, but this program was dealing with ' when a mother's love is not enough -- ie when - as many of us have experienced, the possibility of melt down looms large, and the very real potential for actual harm or chaos can occur ...

abeit best assisted by quick intervention of a suitable professional support team - who can, if not wave a magic wand overnight, at least 'patch' the situation immediately , and put in play a planned strategy - which the parents can see - which may lead to some light at the end of the tunnel

for many in the program - there was not the slightest bit of light at the end of the tunnel,

and it is for these situations - that any initial changes being made at a local level on this "learning to change" should be designed for --

certainly for the more profound cases - the first 2 years - when for example the poor mite who was crying inconsolably - because of inadequate pain management/ nutrition or possible ineffective sedation - needed at least for sleep - all mean that it is difficult to have a positive image.


our case was similiar and it is easier now to show the positive  - he is 7 -- is more comfortable/ pain wise / nutritionally and has a large number of folks involved with his welfare

but  the first few years of M's life -make it  easy for me to identify with the poor parents we saw in the film .



re a county passport- we keep our boys' passports online here

if anyone needs server space for putting or assembling an online passport for their child - which could be password protected for parent's and professional's use- they should contact me here btw......or simply send us the passport as an pdf or .doc with the specialword you require and we will put it up for you

[jol]

here are some links on passports

from islington

and from the states........
http://aappolicy.aappublications.org/cgi/content/full/pediatrics;104/4/e53


we have actually adapted our own passport which includes "how" he is cared for, "how" he is fed - his likes/dislikes etc -- so that in the unforeseen circumstances of our early demise, "other people" ---- a group of people we called his 'pebble parents', who attended the childrens' naming ceremony and brought along 'pebbles' - which we keep in a bowl in our hall!, along with social workers, his school etc could organise his continued care, allowing him to continue to have the same kinds of food and sleep regime, at least for a time.....

we are actually in the process of updating this pebble 'committee' -- as some people are no longer involved, but it was always understood that - they could organise a temporary immediate fix - as a committee -- and delegate, depending on their circumstances, at the time ...

we then circulate to the list the link to his passport document (which we can adapt and update as necessary)...for them to file

[val]

Following on for Jol's comment - many children have a communication passport - in Matthew's case it is attached to his wheelchair.  This is a more 'public' document that people can easily pick up and read.  I think cerebra and scope both have details of how to create them on their websites.

The passport Jol is talking about was written after talking to a friend who is a foster carer for disabled children.  She often has to look after a child at very short notice and whilst she is told their medical needs ie enough to keep them alive she very rarely gets told the child's likes and dislikes ie to keep them alive and happy! 

We wanted to write something that was easily accessible should Matthew need to sudden be taken into care (us under a bus scenario) that had enough information enable the carer to keep Matthew alive and happy but not too much detail that it would take too long to read.

Copies can then be kept with relevant people/in certain places.  Our community nurse has a copy and another copy is in  a sealed and labelled envelope in Matthew's wheelchair rucksack.

Val