Re: Feedback on letter to PCT re MMR safety

[Guest guest]

Talking of PCTs I managed to wrangle my way onto a PCT training for

Equality Impact Assessments EIA. Trainer was a good guy and these

assessments should be done on all policies and services in public

bodies. The EIA should assess impact in relation to their consequences

for equality groups. It takes Human Rights, DDA, Race Relations and

Equality Duty into account so it is broad.

One thing PCTs don't do is break down data based on disability and as

the ramp culture is dominant here (ie put in a ramp and we are

disability friendly) we are pushing for proper data. If it becomes

practice to consider a broader range of disabilities and monitor

complaints based on types of disability I hope that the extent of NHS

neglect of ASD will become more apparent. I worked with Dietician on

service specification and pointed out that they need to work in

multidisciplinary way with psychologists for behaviours, OTs for

sensory information and slts for oral motor issues for her service to

be truely accessible to ASD kids, she left with a perturbed look on

her face....

For example we live in East London, the last census was 2001. Since

then huge population change so they have started to do TB inoculations

again - logic is population health needs have changed so we adapt

practice. However education feels that the number of children with ASD

and related disorders has increased 7 fold - yet PCT has not increased

level of investment in ASD services to accomodate changing needs of

population.....eg inequality in practice. EIAs should be done by all

public bodies and anyone commissioned by public bodies to deliver a

service. They should be done by a senior manager, a middle manger

responsible for delivery and a community member - so we are flooding

EIA training sessions...

Anyhow it is a route to infiltrate PCTs and their consciousness

> >

> > >

> > > hey, let me guess.... They are going to reply with exactly the

> same mantra as

> > > in the first letter...

> > >

> > >

> > > still waiting for a response to my letter here...

> > > (yours not Lambeth by any case?)

> > >

> > > natasa x

> > >

> > >

> > >

> > >

> > > Well not surprisingly, I got a response from the PCT that didnt

> > > answer the question I asked.

> > >

> > > I asked the PCT to:

> > >

> > > supply me with details of the safety studies (and their outcomes)

> > > that were undertaken on the MMR vaccine together with details of

> the

> > > timeline of the safety studies i.e., over what period of time the

> > > children in the safety studies were followed up before it was

> > > decided that the vaccine had no adverse effects.

> > >

> > > They responded that:

> > >

> > > there is currently no scientific evidence to support the

> suggestion

> > > that there is a link between MMR and autism and enclosed some

> fact

> > > sheets about the MMR vaccine.

> > >

> > > So, I have written back repeating my original question (in bold

> this

> > > time).

> > >

> > > There is no way they can come up with adequate safety studies on

> MMR

> > > so I shall just let this play itself out.........and when it is

> > > clear that the safety studies that were done are inadequate, I

> will

> > > ask for their comment on the Hannah Poling case and the new case

> > > where a 6 year old died following a flu shot and was subsequently

> > > also found to have an underlying mito disorder.

> > >

> > > Then I plan to tell them that my older child has autism, comment

> > > that we know autism has a genetic component, comment that whether

> > > either of my children has an underlying mito disorder is unknown

> and

> > > ask for their guarantee that my second son, who hasnt had the

> MMR,

> > > will be safe if he has it.

> > >

> > > It will be interesting to see how they respond.

> > >

> > > Zoe

> > >

> > >

> > >

> >

>