NICE is as blinkered as ever: nothing has changed since 2010

June 25, 2015 at 6:34 pm | Posted in arthrits, rheumatoid arthritis, rheumatoid arthritis (RA) | 1 Comment
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In January 2010 I ‘reported’ that NICE were refusing to consider treatment of early RA with biologics because one had to ‘fail’ on two other DMARDS first, which would take a minimum of six months, more likely a year. NICE (amusing standing for National Institute for Clinical Excellence, actually have very little interest in clinical excellence; their job is to stop the NHS ‘spending too much’ on drugs etc.)

Now, five-and-a-half years later, after threatening to take biologics away from RA patients altogether because they weren’t ‘cost effective’, NICE has kindly decided to leave things as they are for the moment, according to to a joint press release from NRAS, Arthritis Care and the British Society of Rheumatology (BSR), which you can read here on the BSR website (and also on the NRAS and Arthritis Care sites).

I was pleased to see that Professor Simon Bowman, the President of the BSR, is saying pretty much what I was saying five-and-a-half years ago … because there’s a chance that people at NICE might actually listen to him! He says, quoting the press release:

‘It is false economy not to treat patients with moderate disease with biologic therapy when standard DMARDS fail, as these patients will be higher users of healthcare resources. These patients will require more attendance to primary and secondary care, and are more likely to develop co-morbidities such as osteoporosis, heart disease and have more surgery.’

The press release continues with more things I was saying back then: ‘They are also much more likely to lose their jobs, causing financial hardship […] The personal costs to the individual, the NHS, the impact on the rest of their family and the direct cost to the exchequer in lost productivity and benefits claims is massive.’

Judi Rhys, Chief Executive of Arthritis Care, added ‘NICE does not take account of costs such as reduced hospital bed days or the benefit of people getting back into work. We believe those with moderate RA require better access to these drugs. Not only will it improve lives, but it also makes economic sense.’

Here here! It’s good to see the charities fighting back in language that NICE might understand! Of course it won’t alter the problem that the NHS is completely ‘siloed’ from the Department for Work and Pensions who deal with benefits etc., social services etc. So as far as NICE is concerned, as long as the NHS is ‘saving money’, the fact that there are huge costs to individuals, businesses, the DWP etc. is really irrelevant.

PIP gives me the pip!

February 1, 2013 at 6:20 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai | 2 Comments
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The Disability Living Allowance in the UK is being replaced by PIP – the Personal Independence Payment; double-speak if ever I heard it! Everyone who currently claims DLA will have to be re-assessed for PIP, and Arthritis Care estimates that 42% of people who can currently get a car through the Motability scheme and higher-rate DLA will lose their cars through PIP.

At the same time I have just heard that the district nurses in a region near to us are no longer going to be doing what district nurses do, visiting  people in their homes! So people are going to lose cars and then find themselves unable even to see a nurse. Apparently if people absolutely cannot, by any other means, get into the surgery, they will be provided with a courtesy car. I’ll be interested to see how that works out, and how much it costs, considering the district nurses only ever visited the people who couldn’t get into the surgery anyway!

The other thing that PIP is going to do to ‘save money’ is to change the current DLA walking test from inability to walk 50 metres ‘reliably, repeatedly, safely and in a timely fashion’, to someone who can’t walk 20 metres ‘reliably’. Reference to repeatability has notably been removed, so that anyone who can walk 20 metres on the day of their test will presumably not get PIP, even though with things like RA or MS, one might be able to walk a mile one day and no where the next.

2o metres is patently absurd; it seems to suggest that so long as someone can walk as far as the corner of their road or a neighbour’s house then they are fit enough to fend for themselves. According to the MP briefing prepared by a campaign group that Arthritis care are involved in, the 20m has not been based on any medical or scientific evidence; so it’s clearly a cynical decision to save money.

But in reality, much like the district nurses, how much money will it save? People who have their independence taken away from them will obviously be calling more on public services for help. The money will be being spent; just not from the same budget pot.

Who is this going to help?

Agree? Please write to your MP and tell them what you think and why. You can use the Arthritis Care Hardest Hit Campaign tool to help. All you have to do is put in your name and address; the tool will find your MP, produce a letter, which you can edit if you wish, and then you just press send to get it emailed over. It takes seconds – and it could make a real difference.

wheelchair access

Photo by Leo Reynolds, (C) September 4 2010, licensed under Creative Commons

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