23 Comments on Why cancer patients need a new friend

Paul Nash on Wed, 31st Aug 2011 10:01 am


Last year I experienced the Cancer care process with my Dad from diagnosis, via operation, through chemo therapy and finally at the hospice where I sat with him until shortly before he died.

A number of things stand out: the Macmillan nurses were amazing; they gave reassurance they were accessible and they were there. This was an important interface between clinical professionals and us.

The specialist nurses at the hospital were amazing, they spoke openly and were clearly committed to my Dad and his condition.

The folk at the hospice were amazing, they loved my Dad and they were really sad when he passed on. It was they who were with him in his final hours when I couldn’t be there and it was they who accepted my grief when I went to have my final words with him.

So, if everybody is amazing, and they are, why isn’t it working the way that it should? I think Matthew has a point about resource and in many ways we were lucky that I was able to find the time to make the journey and provide some capacity. I think he’s also right when he identifies the point of diagnosis as a key decision gate for the health professionals; once you are through that gate then if you don’t have the resources it becomes a bit of a lottery. The big point for me is the final one regarding airing of issues; by and large we don’t do death very well, we’re still quite Victorian about it. You could say the same about mental illness; but that’s another story.

So, I endorse Matthew’s call for wider debate and discussion and hope that this, in turn, will lead to action; this is the 21st Century after all and Victoria is no longer on the throne – current government please note!

James Marwood on Wed, 31st Aug 2011 10:26 am


Matthew,

thanks for a very interesting and timely post. My father has recently just beaten cancer, largely due to an early diagnosis via an NHS screening programme. This is an example of the NHS getting cancer treatment right. However I have also seen the opposite as other family members suffered poor quality care through terminal cancer.

The positive cases you cite appear to be due to access to specialists – clinicians with a particular interest or expertise. Without wanting to get into an argument as to which healthcare model is better, I wonder if the kind of patient advocacy you propose might be better provided by improved access to specialists themselves, rather than an additional organisation which will not in itself have the wherewithal to improve care. Specialists are generally more common where there is both plentiful supply and competition (In a subsistence economy everyone is a general farmer. As resources become more plentiful we get teachers, builders and doctors). Could increasing the number of suppliers to the market support the outcomes you propose?

Tess on Wed, 31st Aug 2011 10:26 am


Not just cancer patients that deserve equality of access to resources etc.

Kidney failure is “terminal” without RRT and not everyone survives on RRT.

At present, 3 people die a day in UK on dialysis because their kidneys have failed and their lives are daily threatened, then cut short.

Matthew, I am curious to know what the evidence is for this statement: “The NHS is also getting better at empowering people with long term chronic conditions so that they can be more active managers of their own conditions.”

Ihadcancer on Wed, 31st Aug 2011 2:49 pm


Ihadcancer.com was created to become that bridging resource for all parties to come together to network. Whether it be for support, Information, or personal connection we are a great resource in the battle against Cancer.

Tom Brookes on Wed, 31st Aug 2011 3:57 pm


Hi Matthew,

You’ve hit upon something which is, I think, being addressed though it could use better publicity.
I’d encourage you to search for ‘e-patient’ (e for empowered) – ideas neatly summed up in this delightful TED talk ( http://www.ted.com/talks/dave_debronkart_meet_e_patient_dave.html ), about a terminal cancer diagnosis turned around by the power of patient networking doing exactly what you describe – connecting the diagnosis to doctors of specialism and even recommendation of new drugs not offered as standard, all via other patients.
The contention of the e-patient movement is that the patient is both the single most under used resource in healthcare and the best way to improve it – and it’s already saving lives.
This strikes me as a method of removing the malaise from those without the resources and mindset to do this sort of thing alone – it provides an empathic support group but encourages autonomous action and it gives patients hope; one of the best medicines of all.

michael on Wed, 31st Aug 2011 8:28 pm


Matthew,

Our brains find it difficult to understand chance, risk, and probability. This means that healthcare professionals often fail to communicate prognosis even if they give the facts accurately to their patients.

A prognosis should be given as an average plus a range. For example, “about 50% of people with your condition live for 6 months, about 20% die within 6 weeks, and about 20% will live for 6 years or longer”.

Theses are obviously made up figures but they are not far from reality. And they illustrate that the survival curve is asymmetric about the average: it has a “long tail” to the right. In other words, people who live longer than average can expect to live much longer than the original prognosis. Unfortunately, they and their friends will then tend to find spurious associations to explain why they lived longer than the prognosis.

Carl Sagan’s article “the median is not the message” about his experience with cancer and cancer prognosis should be required reading for all cancer doctors, cancer patients, and people who blog about cancer prognosis.

See http://cancerguide.org/median_not_msg.html

Sue Hewer on Thu, 1st Sep 2011 7:16 am


Hi Matthew,

I agree with most of what you are saying here but just to add, my observations from personal experience and working in health+design are that people from non-middle class groups often have very strong, solid and insightful word-of-mouth networking help and support. Other social groups groups are good are subverting and avoiding obstacles too. There could be something in strengthening and enhancing networks that currently work for some people.

sue

Michael on Thu, 1st Sep 2011 9:18 am


Matthew

Your blog raised a number of important and difficult issues, that are, as Tess pointed out, not restricted to cancer.

In my previous comment I showed how difficult it is to understand and communicate (send and receive) prognosis and other probabilty related concepts such as chance and risk.

I would like to comment here on some other issues: the goal of healthcare, patient networks, assessing the reliability of evidence and thye value of screening.

The goal of healthcare
I think most people, and even most doctors, would agree that the goal of healthcare ought to be “to cure sometimes, to relieve often, and to comfort always” — I was careful to say “ought” not “is” because this is more often an aspiration than a practice.

It really difficult for healthcare professionals to switch their main aim from cure to comfort. Which is why organisations such as MacMillan will always be necessary. Unfortunately, the NHS and other taxpayer-funded health systems sometimes outsource the provision of comfort (in the sense of listening and empathizing) to well-meaning, but misguided alternative therapists who can provide nothing more than social grooming disguised as therapy.

Patient networks
Patients find patient networks very supportive. However, patient networks are easily hijacked by industry and quacks. Networks such as e-Patient Dave mentioned by Tom Brooks are vulnerable to not only to exploitation, but also to misunderstanding evidence, risk of harmful side effects, and chance of benefits.

So, the big challenge is to develop patient-networks that provide support as well as accurate and safe information. There are a number of condition-specific charities that do this, but they can be manipulated by donors who have commercial interests in tests or treatments.

Shared Decision Making is a growing field that addresses the need for patients to make accurately informed healthcare decisions. The NHS has supported several joint decision making tools, eg for prostate and breast cancer screening. For example, see http://www.rightcare.nhs.uk/shareddecisions/

http://www.healthtalkonline.org and youthtalkonline allow people to share the experience of patients with similar conditions. The information provided is quality assured so people will not be misled.

Assessing the reliability of evidence and screening
Anecdotes provide unreliable evidence because they are so easily selected to support the point you want to make.

The value (monetary and health) of screening is poorly understood, and often misrepresented, sometimes even by the NHS.

One example will illustrate both these points. A good friend of mine had his prostate surgically removed in his mid fifties because screening had detected cancer in it. He died two days after the operation from a pulmonary embolus. If he had not had a PSA test he might still be alive today, as most prostate cancers are indolent, and grow very slowly.

To make an informed decision about screening for any condition, you need to weigh up the value and the chance of benefits against the cost and risk of harm.

Without careful support most people (including doctors) assume that a test or a treatment provides specific benefits, when in reality they can only provide a chance of a benefit. Which is why every healthcare professional needs to be taught how to assess the chance of cure and the chance of relief from their interventions.

Tess on Thu, 1st Sep 2011 10:40 am


Conditions such as cancer are complex and multifactorial. They may arise from the influence or genes (eg BRCA1) or environmental factors (diet, lifestyle etc.) Usually the latter have more influence than the genetics.

They hard to diagnose and treat, and prognosis is often imprecise. It’s not adequate to say that it’s all down to equality of access or advocacy or independent medical advice etc as Matthew suggests above.

Also – and I speak as someone who has daily contact with people with an incurable genetic kidney disease – people vary in the way they deal with a diagnosed condition. Some put it ‘into a cupboard’, others become ‘expert patients’. However, genes and environmental factors may override any individual behaviours and attitudes.

Good charities work together with health and social care professionals to ensure that patients who come to them are directed to quality reliable resources or specialists. I don’t know any that have been “manipulated” by industry as Michael suggests above. Medical charities in particular go out of their way to be impartial.

The NHS doesn’t have the resources to deal with the many thousands of conditions that affect people today, especially rarer diseases. That’s why charities and patient networks are so vital, in filling in the information gaps, providing a shoulder to cry on, time to talk etc.

NICE Guidelines http://www.nice.org.uk and The Map of Medicine http://www.mapofmedicine.com are improving consistency of care. But we all know there are gaps in provision and access (in particular in the BME groups who for cultural or language reasons are hard to reach and communicate with).

Matthew admits he is “outside his area of expertise” but given his good media and political contacts, he can get his voice heard so perhaps that can be put to good use. For example, there is waste in the NHS the costs of which could be re-allocated to charities and patient groups who can provide targeted efficient support services, but who struggle surviving on voluntary income and, sadly, funeral and legacy donations.

Peter McAllister on Thu, 1st Sep 2011 11:36 am


Matthew your proposition is right.
An advice and advocacy service for patients would provide an objective source of support and advice that would allow patients the opportunity to seek additional medical opinions, be better informed about their condition and engage in postive constructive dialogue with health care professionals about their treatment choices.
From my own recent and direct experience of cancer treatment, I know how difficult it is to assimilate information (no matter how well communicated), identify the relevant questions and seek additional medical opinion in complex medical conditions such as cancer and its various forms. Studies show that the more informed a patient is about the cancer, the treatment options avialable and the actual treatment the more their chances of survival and getting to ‘ the long tail of the statistical survival curve’.

Neither would such a service be a zero sum game. Any service which professionally maintains dialogue would assist health care professionals in forming analysis and enhance the (already good) sharing of medical and treatment research .
Similarly, Macmillan carries out and pioneers excellent work in the fields of direct care and advice to patients and in patient networking through their website and general advice. But this work would be enhanced and reinforced by a service which could also providing further support and common networking for the voluntary organisations.
As Servan Schreiber argued:
‘In a domain like oncology two things are continuouosly changing: conventional treatment and our knowldge of what each of us can do …to reinforce the effect of these treatments.’ An advice and advocacy service would be a positive contribution.

Victoria on Thu, 1st Sep 2011 4:59 pm


A lack of access to knowledge is one of the fundamental problems with cancer treatment, especially for those of us who are considered incurable. Everything is about being a survivor, especially with breast cancer, and when you move to the side of incurable it feels as though the medical profession looses interest. We are not worth the time and effort as we are not going to survive.

I had a friend who died of stomach cancer 7 years ago and from some of her other friends I learned about alternative avenues of treatment to consider. When I was diagnoses with primary breast cancer 4 years ago, and they finally realised that I had secondary breast cancer all along some 4 months later I knew where to start looking.

The saddest thing is that a nutritional approach, or supplements are seen as ‘quackery’, and of course make no profits for pharmaceutical companies for whom breast cancer is BIG business. I use conventional medicine alongside nutrition, supplements, reflexology, acupuncture and Chinese Herbal Medicine. I have researched this, there IS evidence that it works and it is working for me. I was told I had 6 months to live over 3 and a half years ago. I have a reasonable quality of life, and I am still able to work part-time. There are those who say that the big three of chemo, surgery and radiotherapy are the only treatments that are available. However what statistics actually prove is that chemo doesn’t work for most people while it does cause serious, and sometimes fatal, side-effects. Nutrition and the supplements I have chosen have no harmful side-effects, but they do have many benefits. Quackery? I think that finger should be pointed at the chemo. In the end, however, it is the individual who should have the right to this knowledge and the right to choose how they deal with their dis-ease. The information should be made available for that decision to be made. If anyone wants to use just the conventional Western treatment then I applaud them and support their decision. When I told an oncologist that I was taking Chinese Herbal Medicine he rolled his eyes. Now I say nothing.

One of the worst things is to think that there is no alternative to chemo, surgery and rads. That these are the only options and there are no natural substances that can support the body to deal with both the cancer and the treatment is something that I consider to be malpractice. I believe there was a study of causes of death in cancer patients in the UK some years ago that showed that something like 25% could be directly attributed to chemotherapy, not the cancer. Again and again on forums for those of us with secondary breast cancer I hear how another chemo has failed them, in fact insurance companies in the US are now encouraging terminal patients to go into hospice rather than having further treatment. Why? Probably it is financially advantageous to the companies, but also it has been ‘proven’ that patients actually live longer by taking this route and have a much better quality of life.

Chris Woollams started http://www.canceractive.com to make information available to cancer patients. He publishes a magazine called ICON which has been banned from some hospitals because it dares to suggest the things like Vitamin D can have a huge impact on patient survival. I am now happy to have a good quality of life rather than quantity of life. None of us knows how long we have to live, but we can plan to make the most of what we have and we should have the right to have the information to be able to make our own informed decision of how we live that life.

Michael on Fri, 2nd Sep 2011 7:24 am


hew,

interesting to see that your piece was picked up by radio 4 Today prog,and very good comments above too.

Declaration of interests first – my wife is a doctor (not a cancer specialist) and she had breast cancer 4 years ago (so far no recurrence). She had a very good surgeon, who is one of the UK pioneers in breast reconstruction at same time as the operation to remove the tumour (avoids need for subsequent operations later). He works at our local hospital (not the one whe works at), and we didn’t (and felt we didn’t need) to research other specialists or options etc, either through personal contacts or generally via internet etc. I did some googling after we had met him of course.

Your blog made me think about how excellence in medical knowledge and surgical skill should best be shared to raise standards across the profession as a whole. That brings in the whole business of how the health service is organised and managed (with all the recent decades history on that), which makes it a complex issue with unintended consequences etc.

I used the word profession above. Over recent decades (until the coalition) goverments sought to reduce doctors’ control and influence in the health service, and there has also been a flattening out of the traditional hierarchies. My wife is a consultant with over 20 years experience, but she is now spending a significant amount of her time updating computerised patient records with her two finger typing. She spends much less time with colleagues from her team and further afield, than she did in years before. Most doctors will tell you the same and similar.

So on the one hand we want specialised experts with up to date knowledge and skills, spending most of their time with patients, but on the other hand there has been a gradual downgrading of the professional status that helps support and faciltate the model of the expert role.

Another thing – with the primacy of partly independent foundation trust hospitals (if employer is the hospital, not the NHS as a whole), it may become harder for doctors to spend time on work or learning outside of the hospital where they work.

All this said, of course there are always other models and examples that we may be able to learn from. Also this week, (I think on Today programme) there was a report from a pioneering hospital (India?) which focuses on a narow range of surgical operations and the doctors receive a daily mid-day profit/loss statement by text message.

Tim Savege on Fri, 2nd Sep 2011 1:28 pm


As a one time Consultant in Intensive Care and now an ordained minister in the church of England I keep coming across people who dont seem to be taken seriously by their GP’s. Typically they are elderly, often women and they do not feel able to make any sort of stand – just accept what they are told.

In one case I suggested the diagnosis and asked her to see a colleague at Barts Hospital – and I was right.

Really an advocate should go to the doctor with them, but I find they dont want me because they think I would cause trouble for them!!

Chris Harmer on Fri, 2nd Sep 2011 1:47 pm


Dear Matthew.

In many ways I think you are quite right, but rather more than knowing the right people, I think the issue is knowing how the system works and getting access to information on the best care for your condition. I think the availability of information in terms of what is available where is relatively poor, and people are putting themselves unquestioningly in the hands of GPs and local hospitals rather than demanding access to the best available care.
I am speaking from experience as a patient in the area of heart arrhythmias, commonly called “palpitations”, and particularly atrial fibrillation which is increasingly prevalent with age and can lead to serious or fatal stroke if left untreated or inadequately treated.
For probably ten years, I was under the care of a general hospital and my then GP. My condition was such that I was forced into early retirement at 55.
Since then, by chance surfing on the internet, I came across a charity called the Arrhythmia Alliance and its sister charity the Atrial Fibrillation Association which was started by a mother who was demanding better treatment for her child and wanted to network her experiences to other mothers. She is Mrs Trudie Lobban, MBE for her outstanding contribution to patient care. The AFA also has an online forum where patients give each other online mutual support.
Through information and seminars by these wonderful charities, I got access to excellent care from a specialist team at a major hospital, such that my potentially life threatening condition is now 90% improved and indeed I needn’t have retired had I had this treatment earlier.
Armed with information in terms of knowing which hospital I wanted to go to, and which specialist team I wanted to be under, I firmly asked my GP to refer me under the “choose and book” scheme. He was surprised that I could be referred direct to tertiary care without needing to go via the local general hospital, the very hospital that I had had to deal with initially.
My full story is at http://www.atrialfibrillation.org.uk/files/file/Case_Studies/Chris%27s_Patient_Story_update_080310.pdf

Regards, Chris Harmer, Gloucestershire.

matthew taylor on Fri, 2nd Sep 2011 3:47 pm


This is a wonderful set of comments. Thanks to you all of you (especially Michael for his many thoughtful contributions) for your insights and for not telling me off for diving into an area with so little knowledge and – in comparison to many of you – first hand experience. The view I take from the comments and others that have been made to me directly is that there is an important set of issues here. Having a combination of the right attitude, personal resources, advocacy and support from people in a similar position can all make a contribution. But there are also many examples of good practice. A combination of increasing transparcy, the web and a population that is more assertive will accelerate this. For example, I suspect the NHS needs to recognise that more and more patients will try find their way to the best specialists. I hope we will see more websites like http://cancergrace.org/ in the States which bring experts and patients together for on-line conversations about the latest information, trials and treatments.
Which leaves me with the issue of fairness. Whilst I suspect the options and support for those who are able to take them will grow, I still feel there is a need for a more proactive agency which ensures that people who don’t have many personal resources get the best advice and advocacy.

Will Sheward on Fri, 2nd Sep 2011 3:55 pm


Matthew, you mention “attitude of mind” as being one of the personal resources that your friends had access to?

I don’t know if you’ve seen this article in New Scientist suggesting that “those judged by their doctors to have high ‘spiritual faith’ responded better to chemotherapy and survived longer”?

http://www.newscientist.com/article/mg21128272.100-heal-thyself-know-your-purpose.html

I’m not for a moment suggesting a faith healing approach to cancer treatments on the NHS but given that we know that the placebo effect is real then perhaps the personal resource that really makes a difference is the belief that one can positively influence treatment outcomes by taking matters into one’s own hands. The actual efficacy of the treatments found (or deities invoked) as a result of a confident search or unwillingness to take things lying down is of course important but reactions to treatments (at least in the short term) have been shown in some studies to vary according to patient attitude.

If that is the case then your suggested independent service would have to be structured as an enabling organisation, helping people to participate in the search for alternatives and new treatments, rather than simply providing a different set of treatment suggestions handed down from on high.

Victoria on Fri, 2nd Sep 2011 4:27 pm


Personal resources does not mean having money or private insurance. I am on a low income and have no private insurance but I have been able to change my diet, cutting our dairy and red meat, and take a range of supplements that you can get for about £30 a month. The most expensive part of my chosen treatment path is a visit to my acupuncturist every two weeks.

The personal resources that are the most important are those that you think can help you. That may be the conventional Western Medical route, or a mixture as I have done. The problem is knowing how to find those resources. The conventional route seems to fear the empowerment of their patients, but that is an essential part of the journey. This empowerment comes from varing sources, and there is no right way, or wrong way, of doing this. We each have to choose what is right for us as individuals.

Cancer information is already so scattered around that it can be hard to find it in the first place. Maybe it just needs the NHS and / or some major charities to have the guts to bring it all together and let the patient make up their mind. They are all too scared of being sued to do that. If we are going to have some sort of advocacy then it needs to be within the main structures of the health service so it can be found. Not all patients don’t have the knowledge to search the web and if they are given the impression that anything that does not come from the NHS is unreliable or a con then they will not be able to make a fair judgement of the right path for them. I am not talking about standing on your head under a chrystal, but supplements which are proven to work in trials and through centuries of use.

The Government of this country, of any hue, insists on bowing down to EU directives. This has already denied me access to some of the supplements I choose to take, and have been taking for three years in come cases, and some of these have been safely used for centuries. When are politicians going to remember that they represent and serve the people of this country, and not that we serve them. They seem to be more concerned about where their next over-paid job is coming from than doing what is right. My treatment choices have kept me out of hospital for over three years, I pay for these supplements and treatments myself so it is not costing the NHS / tax payer anything. I had to go out and find hope, because you sure as hell don’t get it from the medical profession when you have incurable cancer. If I had a heart attack there would be information and rehabilitation to help you regain your health for as long as possible. With cancer? Nothing.

Yes we do need another friend, but a friend with an open mind and who can help to inspire us and not just give us another wall to beat our heads against.

Good Days from Chronic Disease Fund on Fri, 2nd Sep 2011 6:41 pm


Wow, I can completely relate to your blog. I am part of an amazing organization, Good Days from Chronic Disease Fund, and they work with patients suffering from chronic disease. By supporting their efforts, you can help these patients too. http://www.gooddaysfromcdf.org/ We are all about helping our patients have good days : )

David M on Sun, 4th Sep 2011 6:44 pm


Firstly would like to say that such a blog raising this issue, and being included on the Today programme can only be a good thing.
My wife & I have first hand experience of this after she was diagnosed with Bowel cancer with liver secondaries. The consultant informed us after receiving six months Cheomotherapy that it was my wife’s quality of life that was important and not Quantity, as the cancer was inoperable.
Whilst undergoing Chemo my wife was looking for support from other patients with the same condition through the internet. Luckily from this support and reading another patients story we found a Radical Surgeon in another county. We then asked to be referred to this surgeon for a second opinion. Thankfully this Surgeon was able to carry out two major Liver operations and then back to our home county hospital who performed a bowel operation, previously refused due to the liver secondaries. This was then followed up by a third liver operation out of the county once again.
Initial diagnosis was April 09 and my wife’s last operation was Set 2010 and I can happily report she is very fit and well and now having six monthly check ups.
We are not well connected or well off, and we just had to seek this second opinion and without a chance finding an amazing surgeons name our story could have been a lot different.

Lesley Howells on Mon, 5th Sep 2011 9:31 am


Matthew… I was extremely interested in your insightful blog and wanted to add in the ‘Maggie’s’ perspective. Others have already commented on the power of patient groups and support and at Maggie’s cancer caring centres, we know why it is so effective.

Maggie’s are already the new ‘friend’ of people affected by cancer and their families.

We enable hope through simply bringing people together who have similar stories.

The most powerful way for any human being to build confidence in their ability to take on a challenge is to meet another person who has faced the trauma, bewilderment and unfamiliarity of a diagnosis of terminal cancer. Someone who has faced the same challenge, perhaps a little way ahead in the journey, not necessarily making graceful progress but who can offer their reflections on the emotions encountered, offer useful information and provide hope that there is a ‘whole lot of living to be done’ whilst terminally ill!

Maggie’s enables such encounters. They introduce people to each other in formal facilitated groups or through the casual chat around a kitchen table. Always natural encounters and always supported by Cancer Support Specialists who ensure information is understandable and in an emotionally digestible form.

Maggie’s Centres work in partnership with their NHS colleagues each complementing their respective expertises. We want to help people become true partners with their medical teams equipping them to ask questions and assert realistic wishes; people from all walks of life not just the affluent or linguistically able.

Peter on Mon, 5th Sep 2011 1:31 pm


David M’s story highlights the issue and strengthens Matthew’s argument. Like David and the friends Matthew refers to, I’ve been searching info on the net, contacting others (medic friends and other patients) to investigate the options and new developments regarding my partner’s cancer. However, even if one is used to this type of activity it is nevertheless difficult in an increasingly complex field such as oncology.
Finding leading specialists and pioneering approaches in oncology are difficult -if one is new to the field as most patients are. For instance despite my searches in the same field as David I’ve not found the surgeon he refers to and used.
A national advocay and advice service would facilitate this. This would be a good use of financial resourcesas it wouold increase the sharing of information and knowledge, enageg patients in controlling their own recovery and likely contribute to treatment improvement.
Matthews proposed method of funding such a service also has benefits in terms of not diverting resource from front line treatment and research

Christopher Parsons on Wed, 7th Sep 2011 6:09 pm


7 years ago I was diagnose with cancer of the Oesophagus, and following extensive tests was offered palliative chemotherapy by my local specialist cancer hospital.
Luckily my sister is a GP, and she was able to make enquiries in the NHS. She came up with a brilliant surgeon operating in one of the London teaching hospitals (surgeon and hospital names witheld, the surgeon is now a professor) who took me on. He put me through maximum chemotherapy and then operated sucessfully. Since then I have lead a normal life travelling extensively running a business and enjoying every day.
My wife had an almost identical experience 14 years ago with a brain tumour, being sent out of London to a specialist team by a caring GP – she is now captain of the local tennis club!
I share your thoughts on an advocacy operation as I feel that such a service would save many lives, and I would be prepared to help.

Chris Harmer on Thu, 8th Sep 2011 7:45 pm


Matthew,

I commented previously regarding the treatment of heart arrhythmias such as Atrial Fibrillation, which one in four of us will suffer from in our lifetime and which carries a significantly enhanced stroke risk. My experiences, and the experiences of others attempting to access arrhythmia treatment [through the NHS] seem very similar indeed to the experiences of cancer treatment reported on this blog. It is evident that knowledge of the care pathways available in terms of what is available where and which is the right team are key to getting the best treatment, and this knowledge seems either curiously unavailable or, dare I say it, perhaps withheld.

The result is that very probably, with many serious conditions, it may be that the majority of patients are receiving inadequate or partial treatment locally which puts them into a perpetual holding pattern where they will survive, or maybe not, when life-prolonging or life-saving treatment is actually available within the NHS should they have the knowledge and drive to access it.

And in terms of support, peer support, advocacy and information provision, I hold up the Atrial Fibrillation Association as a beacon of best practice – do look at their website at http://www.atrialfibrillation.org.uk/ and the link from that site to their patient support forum. The AFA is a third sector charity, and provides an example of ONE way to go in other sectors. But, as you say, there is a case for some form of national advocacy service to help patients and GPs by provision of appropriate information in terms of what treatment possibilities are available and where.

Is this lack of information in any way deliberate? If all patients in need found out about the best care path, would the system be overwhelmed? Is this lack of information a cost control mechanism?
I’m sure the stock answer would be shock, horror, no, no, no, absolutely not at all levels.
So how do we challenge this and move it forward?

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