As ‘admininstrator’ I can see that a couple of people have posted recently but marked their posts as ‘draft’ so they can’t be seen by others. This may be intentional or it may be a lack of famililiarity with the system. They look like finished posts to me so if you have posted recently and haven’t seen it appear then please check the status of your post and press the publish button!
There was a comment recently that eMail alerts weren’t being received. ‘Comments’ don’t get an eMail alert but ‘Posts’ do. The posts are a new topic and the comments are the responses (in this weird but vaguely logical blogging world). If you have problems you can try eMailing me for help but I am no techie expert – you might do better to ask a child who will be more computer literate!

As most people in the UK know, the NHS is about to undergo the biggest change since it started. I struggle to get my head around the changes but am working on it. Why is this relevant to the CUP community? At one level it (probably) doesn’t make much difference to the patient – but particularly if one wants to challenge things, such as the way treatment is carried out, it is necesary to have some understanding of the system.
The interactive diagram in this link gives an overview and is probably the simplest single explanation that I have seen to date. Clicking on any of the organisations on the diagramme will provide you with more information about their specific role.

http://healthandcare.dh.gov.uk/system

All systems should now be working fine after downtime yesterday to transfer servers and make some updates. Let me know if any problems.
Please keep posting!

Our Webmaster needs to undertake some technical maintenance which unfortunately requires the site to be down from the morning of Saturday 16 Feb until the morning of Sunday 17 Feb (UK time). Apologies for this but it is a long overdue change of servers which will hopefully improve some problems.

As you probably know the NHS is starting to go through the biggest change in its history. I cannot judge whether, in the long run, this will be good or bad for the CUP patient. The NHS is working now to get everything in place. I don’t think the patient or carer will notice much difference but you may be interested to know what is happening behind the scenes – it is certainly causing some anguish. I have adapted a Dept of Health document which explains the organisations and put it at the bottom of this page on the website.

http://www.cupfoundjo.org/diagnosis_and_treatment/nhs.html

We asked an MP to raise a question to the Secretary of State for Health in the House of Commons about molecular profiling. I wasn’t expecting much from it but wanted to use it for raising awareness of the issue and as a benchmark (most will know from past posts that I am very much in favour of it and would like to see it offered on the NHS but accept that the evidential and financal cases need to be made.)

You can see the Hansard entry here:

http://www.publications.parliament.uk/pa/cm201213/cmhansrd/cm121109/text/121109w0002.htm#12110969003211

The relevant bit is:

Grahame M. Morris: To ask the Secretary of State for Health what assessment his Department has made of the effectiveness of gene expression profiling in the diagnosis for patients with cancer of unknown primary. [127187]
Anna Soubry: Genetic expression profiling of cancer of unknown primary is still at the research stage and not yet routinely available on the national health service. Tests are available for Epidermal Growth Factor Receptor for Non-Small Cell Lung Cancer, KRAS for colorectal cancer, KIT and Platelet Derived Growth Factor Receptor Agonist for Gastrointestinal cancer, and Her2 for breast cancer.

I’m afraid that we have been hit more than usual this week by these sad Spammers. I’ve been in meetings in London 2 days already this week and so I’ve been a bit slow to remove them. It should be impossible to get past our spam filters and register but somehow they (or a machine) is succeeding. If it gets worse we will review the signing-up process but I’m reluctant to make it too hard as I don’t want to put off the genuine.

Before you ask why, when I’m at meetings, my office assistant can’t take action his computer skills are limited – although having 4 paws he can cover the keyboard quickly. If the photo comes out below it should show Henry, who was Jo’s cat. He is going on 17 but would be happy to sink his teeth into any spammer if pointed in the right direction.

Peer Review Measures for CUP were launched by the National Cancer Action Team on 24 October 2012. This is a very, very significant moment for CUP patients of the future in England. The measures, based on the NICE Guideline of July 2010, are used by the National Cancer Peer Review Programme as part of the assessment of cancer services.

What this means is that Hospitals treating CUP patients in England (it doesn’t apply elsewhere) will be ‘audited’ to see whether they are ‘compliant’ with the ‘measures’ drawn up by an ‘expert group’ over the last year or so (I was part of the group which included a number of clinicians of different disciplines including Dr Osborne who was the clinical lead for the NICE Guideline).

The 2010 NICE Guideline has started to revolutionise the way CUP patients are treated but it is a ‘Guideline’ – in other words, and as some patients have experienced, it can be ignored. Hospitals will not be keen to be exposed publicly that they are non compliant with the measures – that is why it is very significant. It is not a 100% guarantee that hospital will comply but those that don’t will be named and that will help us point patients at ‘compliant’ hospitals.

For health professionals reading this, the process starts with self assesment and internal verification from next April running up to external verification Oct/ Nov 2013.

To read the measures look under Cancer of Unknown Primary on this page

http://www.cquins.nhs.uk/?menu=resources

We are launching our first Awareness Day on Tuesday. You can see the details in our press release: http://www.cupfoundjo.org/support_our_work/media.html

It is very UK-centric but hopefully in years to come we can go global as we learn lessons from the first attempt!

Apologies if this approach seems horribly flippant to patients undergoing treatment and those who have lost loved ones but we’ve had to find a simple ‘hook’ to capture interest, before trying to make the public more aware of the realities of CUP.

I’m convinced that raising awareness is a vital key in changing the perception that people have of CUP that can lead to improved diagnosis and treatment. We need put pressure on the public, who need to pressurise the parliamentarians to demand research and improvements; we need to make the medical profession more aware. This year we have had some success with local media stories but we are not getting much interest from national media, but we are working on it!