(National Institute for Health and Clinical Excellence)
It is becoming clear that the Daily Mail hates NICE. Now for many people that is recommendation enough for the much-maligned body, however I think we do need to look at this in a little more detail. I am not sure why the Mail hates NICE so much except perhaps that NICE gets to decide a lot of national policy in terms of where healthcare funding priorities are. In this article I spent some time explaining how NICE do this but in short they decide what PCTs should fund on the basis of what works and is cost effective. I think this is the reason the Mail do not like it because they seem to think it is their right to decide where NHS money is spent. Please pause for a moment and reflect on what a horrific prospect that is.
And to some extent it has already happening with the government’s ludicrous idea of setting up a special fund for cancer drugs. A couple of points before I explain my objection to this fund:
1. I am a doctor – a surgeon in fact and am used to dealing with patients with cancer. I want my patients to have to best possible care.
2. When I was seventeen my mum died from breast cancer. I know what it is like to watch someone slowly die from cancer.
These two statements are important because I do not think it right to set up this special fund. The reason NICE did not recommend these drugs is because they do not work very well and they are extremely expensive. If we had an infinite amount of money then I would have no objection but one thing needs to be clear; by funding cancer drugs we are not funding something else – something that works a whole lot better. The technical term for this is opportunity cost. This is the problem, by doing one thing, we cannot do another, so it’s vital that we do things that work.
I’m not sure if it’s the gloating or the glaring inaccuracies that annoyed me most.
So let’s summarise the story:
1. The EVIL NICE wouldn’t allow doctors to prescribe three drugs for Alzheimer’s disease unless people were really ill.
2. The Daily Mail raised lots of money for a judicial review forcing NICE to make a U-turn.
3. Fewer than one-in-ten Alzheimer’s patient’s currently receive the drug whilst trials clearly show a benefit if started early
Dementia of whichever form is a very cruel condition, it slowly robs someone’s personality, often leaving relatives grieving for the loss of their loved one long before they’ve died.
I have read the NICE summary report and – even though it’s not my area, I know how to read clinical evidence, it’s part of my job. The main problem with these drugs is that whilst they are relatively cheap they do not work very well. In a small number of people they have significant benefits for a short space of time whilst in many they have no effect whatsoever.
I just want to answer those three points from above.
1. One of NICE’s roles is to advise on new therapies and treatment’s effectiveness. When NICE recommends a drug/therapy PCTs (Primary Care Trusts, who currently control the NHS money) HAVE to fund it – by law. When NICE state that a therapy is not cost effective then the PCTs have it within their discretion to fund it if they want to. But to do so means not funding something else.
2. The Judicial review is interesting, here’s what it said;
On 10 August 2007 the judge ruled in favor of NICE on five out of the six grounds bought in court. The judge found that NICE:
- did appropriately take into account the benefits these drugs bring to carers
- appropriately reflected the costs of long term care in its calculations
- did not breach principles of procedural fairness by providing a ‘read only’ version of the economic model
- was not irrational in concluding that there is no cumulative benefit to patients after 6 months’ treatment with these drugs
- that NICE’s assessment and consideration of the AD 2000 study was not irrational.
The judge ruled against NICE on one of the six grounds bought in court. She found that NICE did breach its duties under the Disability Discrimination Act and the Race Relations Act by not offering specific advice regarding people with learning disabilities and people for whom English is not their first language in its technology appraisal guidance
3. The trials clearly show that the benefits of these drugs is quite limited and are seen in a minority of patients.
I am very pleased that NICE has now recommended that these drugs be made available. I hope they bring help to many people. However my confidence in these medicines is not because the Daily Mail said so but because of what the evidence showed. Analysing the evidence is very complex. I am an expert and in the hour or two I had to spare today I was only able to scratch the surface. It takes a lot of time and skill to do this properly.
Reading through the NICE website today, particular the submission from the Royal College of Psychiatry it is possible to conclude that when NICE ruled not to approve these medicines five years ago for mild dementia they got it wrong. I’m not sure, but if they did, that’s not surprising, this is a particularly difficult decision in a field where none of the decisions are easy.
However, that does not mean that the process is wrong, that does not mean that NICE does not do a very difficult job well.
It is becoming clear that the Daily Mail believes it has the right to decide on Healthcare spending priorities and I want everyone to realise how terrifying that prospect is.
P.S. Well done to anyone who’s managed to read all this!