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Archive for the ‘Cancer Developments’ Category

Last week a news item was reported saying that a person’s chance of surviving a year from a cancer diagnosis in the UK varies depending on where they live. This is sometimes referred to as a ‘postcode lottery’. You can read more on this news item here.
These statistics are certainly cause for concern. Where you live should not determine the quality of your care. But is the issue really as clear cut as that? Are the differences a result of the care that is given, or the screening in the area – or are there cultural factors at play, with people in one geographical are more likely to go to the doctor with worrying symptoms than others?
The parliamentary group has suggested that targets for one-year survival which do not take account of age be put into place across the whole of the NHS. It is claimed that this would benefit over-75s in particular. But benefit them in what way?
Unfortunately, I fear that what would actually happen is that, given such a target, there would be an emphasis on prolonging peoples’ lives beyond the one year measure. This could be at the expense of that natural death I was supporting in my last post. Prolonging life can be an expensive business. In our already stretched health service, I would hate to see the focus being put on causing suffering to the dying by extending their lives to meet a target at the expense of helping them die well, or even worse at the expense of other treatments.
Surely a better focus would be to reach the underlying reasons for the geographical differences – which may not be the same in each area. Sure, ask health services to improve their practices where they are not up to scratch – but also make sure that the money does not need to be spent on education for doctors to recognize symptoms, or outreach to communities as to what symptoms require investigation (as in iVan which I mentioned in an earlier post).

How do you think this information can best be used? Do you like the idea of targets? Let me know your thoughts in the replies below, and let’s join the debate.

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Information matters! Research has shown that for women having a hysterectomy, having enough information before the surgery produces a better result. Being informed improves your health!

If ever there was a condition where much information is needed, surely cancer must be it. When someone is diagnosed with cancer, often everyone in the family feels they have stepped into a different world. A different language is spoken, and suddenly processes of the body we rely on every day are called into question. So I was interested to learn that the way information is supplied at the point of cancer diagnosis is set to change in the UK.

In the past, up to 39% of patients have been offered NO written information at the point of diagnosis. Where information is provided, it has been in the form of leaflets or other large chunks of information. This has to cover a lot of different scenarios, and so it may be unclear which parts actually apply to the person, their cancer and their treatment.

The new initiative is known as Information Prescriptions, and there is currently a small test being carried out, whilst all the information is compiled with a view to the system beginning to be available in 2010. In this initiative, the health professionals will compile a set of information which is relevant to the particular person, their diagnosis and agreed or possible treatments. This will be done in the same appointment where the diagnosis is given.

The advantages I see to this system are :

  • There will be less information to go through
  • The information will be available straight away
  • The information will be specific to the actual diagnosis, and situation (as cancer is such a diverse disease)
  • The information will reflect, and be relevant to, any decisions that have already been made
  • Any choices that are still to be made can be shown clearly – with information to help in making them
  • The information may be available in other formats, eg as digital documents, and this may help with spreading it through the family
  • The information can more easily be provided in other languages, for those who do not speak English as their first language, or as audio files for those with restricted vision

I regard it as very positive that the information provided to those with cancer and their families is being thought through so carefully. But of course, there are possible issues that this progress raises, which must be considered. I will begin to cover these in my next post. In the meantime, use the comments facility to let me know what you think. Are you in favour of this initiative? What information were you able to access through the health professionals? How does this compare with how things are done at your hopsital?

Until next time,
Anne

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Prof. Nicola Robinson

Prof. Nicola Robinson

Back to the NCCSHG conference, I’m now looking at the presentations made by a series of fabulous and interesting folks on a variety of topics. The first was Professor Nicola Robinson of Thames Valley University on the subject of CAM (complementary and alternative medicine) and especially research.
So what is CAM – Prof. Robinson described it as ‘health care lying outside conventional medicines’. She also said that 80% of the world’s population relies on what we call ‘alternative’ medicine. So really what we mean by conventional medicine is modern science-based disease care. When someone is diagnosed with cancer, that modern care may very well save their life. But it is not the whole answer. If it was, there would not be an upsurge in the demand from patients for CAM treatments and therapies.
According to Prof. Robinson, 86% of cancer patients use CAM to complement conventional treatment. The reasons for this include:

  • dissatisfaction with conventional treatments offered
  • attempts to lessen the impact of side-effects of conventional treatment
  • wanting a holistic approach (which also relates to patient empowerment)
  • alleviating the effects of chronic disease which can be managed but not cured

According to a book I read recently, ‘Cancer : 50 Essential Things to Do’ by Greg Anderson, people who have survived in spite of being told they are terminally ill have several strategies in common. One of the most powerful of these is being pro-active about their own health. They regard it as their job to become well, not someone else’s job to fix what is wrong with them. I believe CAM has an important part to play in this. 96% of the survivors Greg Anderson interviewed had undertaken a course of conventional treatment – but they also looked at such areas as nutrition, exercise and spiritual development. (I will review this book in more detail in a future post)
So CAM has a place in cancer care. In the UK more than 90% of cancer care centres offer some kind of touch based therapy. Professor Robinson’s role is in investigating what the benefits are. How do we measure the improvements that people experience? How can we give people more information to empower them to make informed choices about the therapies they want to integrate into their care?
I, for one, am pleased to see that both money and energy are being put into taking the best from all healing traditions so we can have a future where wellness is a priority. I hope that the research will also look at how therapies can be used to reduce stress, for instance for family members of those with cancer. My gut feeling is that this could have a preventative effect and reduce the likelihood of going on to develop stress-related illnesses as a result of supporting someone else.
If you have used CAM treatments, either as a person with cancer or a supporter, I would love to hear from you what difference it made to you.

With best wishes,
Anne x

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Last weekend I attended the UK’s National Conference of Cancer Self-Help Groups (NCCSHG). Just like most of the groups themselves, this is organised on a volunteer basis. But the quality of the conference was of a fabulously high standard. There was camaraderie, understanding, passion of the volunteers, and a range of fascinating and entertaining speakers. I didn’t get to take part in any of the workshops (because I was giving one), but the range on offer ran from card making to the future of support groups.

It was my first time at the conference, and I thought it would be good to report my impressions. Over the next few weeks, in addition to other items of interest, I’m going to be revisiting the conference to share with you some of what I learned. There were definitely highs and lows, especially as one of the long-established volunteers sadly died over the course of the weekend. But the spirit of the members – most of whom have experienced cancer themselves, or supported a family member, and now give up their time to help others – was what particularly shone through for me. It was a joy to be there, from the good humour and friendliness of the delegates through to the fabulous buffet lunches provided at Manchester University’s Fallowfield Campus.

So I’d like to start with just thinking a little about Cancer Self-Help or Support Groups. Why are they important? What do people gain from them? I think the first thing is probably that sense that someone understands what you are going through. Also, the best groups are very positive – one lady has told me the group she is part of call themselves a Cancer Survivors Wellness Group, which is a great focus. Another aspect I believe is time to talk. Sadly on a visit to a doctor there is likely to be very little time for reality to sink in enough to even think of questions, let alone ask them and have them answered. Some people may access this support through a MacMillan nurse or a Cancer Liason Nurse – but those who have experienced cancer themselves or through a family member also have a wealth of wisdom and empathy to offer. I would love to hear about your experience of support groups. What do you or have you got out of attending (or volunteering)? Are there enough groups? Are they easy to find? Please post in the comments and join the discussion.

Well, those are my first impressions. I’ll share more later, and look forward to hearing from you either in the comments or by sending me a message.

Anne x

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