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Tuesday 17 January 2012

Nice Guidance (or lack of I should say)

This one put a smile on my face. It happened to me several times in my journey to get the NHS to help my son. I was told that NICE did not recommend cranial band treatment and the NHS would not fund it unless it was recommended by NICE. So if a doctor ever says this to you put them straight as this is not true. NICE do not recommend Cranial Band treatment, but they also do not not recommend it. It is simply "out of their remit." Below is the response from NICE.

NICE is an independent organisation responsible for providing national guidance for the NHS in the UK on promoting good health and preventing and treating ill health. Our role is to produce guidance (advice) for the NHS on how to treat health conditions.

We were notified of the topic ‘Moulding helmets / cranial banding for plagiocephaly’ (http://guidance.nice.org.uk/IP/313) for consideration under our interventional procedure programme in February 2055 and following consideration of the topic we decided that it did not fall within the remit of this programme.

It may be useful to provide some background information about our Interventional procedures (IP) programme. IP guidance protects patients' safety and support people in the NHS in the process of introducing new procedures. Many of the procedures that NICE investigates are new, but we also look at more established procedures if there is uncertainty about their safety or how well they work. By providing guidance on how safe procedures are and how well they work, NICE makes it possible for new treatments and tests to be introduced into the NHS in a responsible way.

Whilst our interventional procedures guidance makes recommendations on the safety of a procedure and how well it works, it does not cover whether or not the NHS should fund a procedure. Decisions about funding are taken by local NHS bodies (primary care trusts and hospital trusts) after considering how well the procedure works and whether it represents value for money for the NHS.

As you are aware, in accordance with our published methods guides this particular procedure is not within remit because it is not interventional. To fall within the Programme’s remit, a notified procedure must involve an incision or a puncture or entry into a body cavity, or the use of ionising, electromagnetic or acoustic energy.

It is important to note that just because a treatment or procedure has not been assessed by NICE, does not mean that it should not be made available on the NHS. A lack of guidance from NICE is NOT the same as a recommendation against the use of a treatment. There are many treatments available on the NHS which NICE has not appraised. In the absence of NICE guidance PCT’s are expected to make their own decisions about whether or not to provide this procedure, based on their own assessment of its effectiveness.

The Department of Health has issued good practice guidance for Trusts on managing the introduction of new healthcare interventions, and have stated that “It is not acceptable to cite a lack of NICE guidance as a reason for not providing a treatment”. You can download this good practice guidance document via the following page of the DH website: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_064983 . (This quoted text comes from page 4 of the document).

For further information and advice about your own situation, it would be advisable for you to contact Patient Advice and Liaison Service (PALS). As well as providing information about the NHS and dealing with health related enquiries and concerns, your local PALS office can also advise about the NHS complaints procedure and/or appealing a PCT decision (http://www.pals.nhs.uk ).

I hope this information is helpful. Please do not hesitate to contact me again if you have any further questions.

Kind regards

Janet

Janet Fahie

Communications Executive

National Institute for Health and Clinical Excellence

Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BD | United Kingdom
Tel: 44 (0)845 003 7781 | Fax: 44 (0)845 003 7785

Web: http://nice.org.uk

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