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Anyone know anything about NICE guidelines and legal requirements?

(14 Posts)
HairyMaclary Tue 18-Oct-11 20:55:07

I will post in legal as well but I'm hitting a brick wall with a procedure for my DS and wondered if anyone could help.

How does the fact that 'All NHS organisations have a legal requirement to implement NICE guidance' fit with the fact that 'Interventional procedure guidance (IPG) does not cover whether or not the NHS should fund a procedure. Funding decisions are taken by local NHS bodies after considering the clinical effectiveness of the procedure and whether it represents value for money for the NHS'.

These two don't seem to match up as if funding is withheld then how can they be implementing the guidance?

Anyone got any insight - we really want a procedure funded!

Northernlurker Tue 18-Oct-11 20:56:46

The PCT local to you should have some sort of special cases committee to decide what is and isn't covered. What is the procedure?

HairyMaclary Tue 18-Oct-11 20:58:58

We've been through them, they refused at triage for seemingly dubious reasons, the consultant is a bit cross and our local paed did not expect it. Procedure is covered by IPG373, an operation called SDR.

BarryKent Tue 18-Oct-11 21:05:05

Message withdrawn at poster's request.

BarryKent Tue 18-Oct-11 21:06:57

Message withdrawn at poster's request.

HairyMaclary Tue 18-Oct-11 21:09:28

Barry - We've looked into that option very seriously but for us the better postoperative rehabilitation offered here and the fact that we were starting to feel a little bit like we were on a conveyor belt over there means that we would be reluctant to take up that option. However if it's the only way of getting the op we will do it. I'm in close contact with the USA lot and one lot over here!

HairyMaclary Tue 18-Oct-11 21:10:24

Don't worry about overstepping - it is an option! Just one that we think is not as good (and I know I'm in the minority in thinking that!)

BarryKent Tue 18-Oct-11 21:17:05

Message withdrawn at poster's request.

Northernlurker Tue 18-Oct-11 21:53:04

I see. Well I think your MP is the next port of call. Clearly this is a complex and very expensive procedure. If medically it is right for your child then you should be able to access it because it's also deemed safe and effctive BUT there is a big gap in the money in the NHS at the moment and for now at least I think your MP/fundraising has to be the way to go. You won't get anywhere by any other means I suspect.

HairyMaclary Tue 18-Oct-11 22:01:06

Thank you NL. I appreciate you taking the time to look into it. The op will save money in the long term as he will need far fewer interventions in the next 10 years or so but I can see that it doesn't look good for this year's budget!

I will contact our MP once I've given a couple of weeks for the PCT to respond to the consultants latest letter.

Northernlurker Tue 18-Oct-11 22:26:21

At the moment ime PCTs are unwilling to enter in to anything that does look good for the budget let alone anything that is a big up front cost. The climate is really hostile and the uncertainty over the future of the organisations is not helping. Caught up in that are patients like your ds. A fact which doesn't seem to way much with the PCT managers I have had contact with.

Northernlurker Tue 18-Oct-11 22:27:08

sorry that should be 'weigh' not way -also sorry to be so gloomy!

HairyMaclary Tue 18-Oct-11 22:34:50

Gloomy is helpful, it's at least realistic! It makes me realise that they won't just roll over so we'd better get a move on.

I'll have to put a plan together and will be in touch with our consultant tomorrow. Thanks.

BarryKent Tue 18-Oct-11 22:50:38

Message withdrawn at poster's request.

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