Would carrier pigeons be a backward step?

We received a letter last week from Isaacs GP inviting us in for a Care Plan to be written up, something – according to the letter – that will enable Isaac to get an enhanced service from the GP.

Curious as to how this may align with the other planning processes surrounding Isaac (TAC, Education Health Care Plan) we said yes and will be going next week.

Yesterday I got a call from the GPs receptionist asking “for some details to help the Dr before you see him”. The questions;

Who is Isaacs Lead professional on his TAC plan?

Which consultants does Isaac see?

Does Isaac go to nursery?

Then others around phone numbers (which they already had) and ‘how many brothers and sisters does Isaac have’ (all family is with same GP’)

I’m glad they asked, because better to ask a question than make an assumption, but it showed me how little communication there is around children with Long term conditions.

I checked back and the GP has been named and cc’d on EVERY TAC plan. They’ve been invited to send any relevant updates but never sent. I don’t think (or is it blind hope?) that this is an individual failure from GP as it’s been said openly at our TACs that ‘sometimes we don’t get updates from Dr’s’.

Isaacs consultants, many and varied across 3 hospitals, all routinely cc the GP into clinic letters – over nearly 4 years there must be dozens. I would hope that knowing who Isaacs consultants are would not be a question I would have to answer.

Isaacs nursery placement is heavily and brilliantly supported by the Outreach Nursing team at Royal Preston, but there’s clearly a disconnect between them and GP for that not to be known.

I’m trying not to sound moan-y but this again is the issue of communication as I’ve blogged about previously but on these issues it seems systemic comms issues. The CCG idea for GP led care plans is great but to expose such lack of knowledge before we even start hardly instills confidence.

The real challenge facing everyone (and that’s families too) is the creation of a system that recognises that a link has ‘gone dead’ before it’s exposed by what the patient experiences as poor care or poor communication. Had I known that clinic letter after clinic letter were being sent but not ‘digested’ I’d have done my best to fix it.

As always I’ll try to end positively with what may help (a lot of which I realise will be ‘good practice’ or procedural but Isaac doesn’t ‘see’ the procedures, only the output)

1. Expect attendance at EHCP meetings by GPs. It’s not multi agency if they’re not there. If not in person what about Skype / FaceTime or at worst a written update?

2. As well as an having an onus on GP to do care plan could it be made a measure for them to gather an update from lead pro quarterly?

3. For GP to be satisfied that they know the child from both a medical and social model of having LT condition. Evidence communication.

It’s incredibly complex I know to solve multi systemic comms but surely if it’s ameliorated for the relatively small numbers of children with lifelong disabilities then their future experiences over a lifetime of health care can be vastly improved.

One thought on “Would carrier pigeons be a backward step?

  1. I think the issue is that no-one being responsible for co-ordinating care (except for the parent). Our kids don’t have a GP that is responsible for their care, unless we make a point of developing a relationship with one. TAC meeting communication will go to the practice but may be seen by various GP’s and unless there is something to be ‘actioned’ that is all the digesting that will be done. Each GP will have several thousand patients under their care. Yes the GP has all that information but the easiest way for them to collate it into one place was to call and ask you. I suspect it was just a time thing. Seeing the benefit of having information together is at least a step in the right direction.

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