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Our daughter Rebecca is 42,
she lives in her own little purpose built bungalow.
She has 24 hour support
When she is on top form she has a ball, she loves life,
she enjoys everything she does.
She has many health issues, severe learning difficulties,
but I think the thing that affects her life more than anything
is very severe uncontrolled epilepsy
which really has a very profound effect on her day to day life.
Because health has this huge impact we feel
it is really important that the whole family needs to be involved.
We've known her from day one.
Because we know Rebecca's communication and we know
what she's like when she's well and it enables us to
describe to the GP why we feel there is something wrong.
What she's like when she's ok
and how she is displaying her distress.
One of the main tools we use for Rebecca's health
is a health action plan.
When we first learnt about them we looked at the off the shelf plans,
some of them actually were very good and very useful,
but we felt that they actually didn't meet Rebecca's needs
so we decided to develop our own.
We then consulted with her support team and the rest
of the family so everybody had an input.
It gives an overview of her disabilities.
And then from that we look at each aspect of her health,
so we may be looking at the condition of her eyes,
her hearing, her digestive system,
her physical ability - whether that's deteriorating.
What emerged I suppose were a number of what
we called action points and these were things that need
to be dealt with. So the action points were very valuable
and still are extremely valuable and are modified really all the time.
I think better decisions have been made, particularly recently
using the health action plan and the action points.
Previously we've been to the GP about Rebecca's reflux.
She has been suffering very badly,
a lot of screaming when reflux has happened.
And at one point when we went to the GP he was quite dismissive,
and said that it's not really a problem, don't worry about it.
When we went back using the health action plan,
we had a lot of evidence to show him that actually
it was quite a severe problem for her, he then took the issue
seriously and has started prescribing some medication
which is being phased in and we're taking it very steadily
and recording the information to take back to him so he can
see if his actions are working.
I think it has helped the health professionals to listen to
what we've been able to say. It has given us the proof
that we need to go to them and speak with some authority
and to be sometimes fairly forceful in saying this needs to happen.
It has also enabled quite major improvements in her life.
One of the examples is that she has a sleep system which all
started from in a health action plan that expressed concern
as to how she was lying in bed so we've achieved that.
And we've also achieved a sort of order to the things that need
to be done as it's enabled us to prioritise.
It gives you a purpose, it gives you a path to follow and it
also helps you to know when things should be happening.
So yes, go for it.