Tag Archives: medicalinnovation

How Medical Innovation Saved My Life

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By @DominicNutt diabetic and cancer patient

Two years ago I was diagnosed with a rare, incurable cancer. Had it not been for my surgeon, who pushed the boundaries of accepted treatment, the chances are that I would now be living on death row. But unless a new Bill is made law, other doctors may be too scared to do the same.

In December 2011, I developed a nagging pain in the lower right side of my stomach and was admitted to hospital for an emergency appendectomy. However, tests showed there was nothing wrong with my appendix. But my consultant, told me that “by luck” they had found on it a rare, 12mm neuroendocrine tumour (known as a Net).

It had not been responsible for the pain, the cause of which to this day remains a mystery.

I had my appendix removed, which is standard treatment for Nets – otherwise, the tumour would have spread and killed me, because Nets do not respond to chemotherapy or radiotherapy.

The next bit was tricky. Nets are so rare that there is little knowledge as to how they behave. All doctors do is make estimates based on limited case studies.

My consultant, a colorectal surgeon, said that standard procedure for a Net of 10mm or smaller is to remove it, but not to take any other action, since the best guess is that the chance of spread is low.

Anything over 20mm, however, and doctors will remove nearby lymph nodes, the first organs that cancers normally spread to before invading the rest of the body.

Anything between those sizes, like my tumour, leaves doctors scratching their heads. They would be entitled to take no action. Also, surgery to remove my lymph nodes would mean slicing out a large part of my colon, with all the inherent risks. I am an insulin-dependent diabetic, so the hazards of surgery were even greater for me.

Fortunately, my consultant reviewed my case with other experts and they recommended surgery.

When the results came back, they found a cancerous cell in one of the 17 lymph nodes they had removed. The cancer had spread, despite very low odds.

This is a tale of a doctor who was prepared to take a risk – one that has probably saved my life. But had there been complications, and had he not found a cancerous cell, I, or my widow, could have sued.

Last year, spending on negligence claims by the NHS Litigation Authority, which provides indemnity cover for such claims, was, for the first time, more than £1  billion.

And legal cases against the NHS pending in the litigation pipeline could amount to a bill of £24 billion – around half the UK defence budget.

Frightened of litigation, many doctors do not push the boundaries of medical knowledge, and opt instead for “safe” standard procedures.

I tell this tale in support of Maurice Saatchi, who has drafted the Medical Innovation Bill which, if passed, will allow doctors, with the patient’s consent and in cases where the evidence on standard procedures is unclear, to innovate.

It would enable them to review such cases with other experts – as my consultant did – and come to a collective decision. Following this process would give them a legal defence if things were to go wrong.

The Secretary of State for Health, @Jeremy_Hunt, supports the Bill and has opened it out to a public consultation.  He has told Parliament that if the public responds positively to the consultation, then the Bill will become law.

It’s now in our hands.

Dominic Nutt is part of the Saatchi Bill team.

 

Why innovation would help patients with womb cancer

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Photograph ©_honus_ on flickr 

By Kaz Molloy

As a womb cancer survivor I endured surgery, chemotherapy and then radiotherapy – often referred to as the slash, poison and burn approach to dealing with cancer.

Over the past few decades there have been many advances in detecting cancers early but the standard approaches to treatment remain mostly unchanged. In some cases the treatment regime has been the same for decades, leaving patients at the mercy of sometimes ineffective and often barbaric treatments.

Routine chemotherapy for womb cancer is a very recent innovation in the NHS as studies have shown that 1 in 10 women will be helped by chemo – so it is definitely worth trying.  But maybe an individual assay of each patient’s tumour might be able to detect which tumours will be susceptible to chemotherapy and which tumours won’t. This would spare 9 out of 10 patients (and their families) a seriously distressing treatment programme.

We are now in the 21st century and yet innovation in the treatment of most cancers has not progressed because of the failure of the NHS medical establishment to try anything new. Many doctors are afraid to try new procedures because of the risk of being sued if something goes wrong.

The Saatchi Bill seeks to bring about a change in the law to protect doctors and allow them to push forward with innovation in new treatments, which is something that we all want.

As far as womb cancer is concerned, although it is often classed as a rarer cancer, it is still a cancer with a relatively good survival rate, if detected early. It is predominantly a cancer of post menopausal women, although in recent years there have been more and more younger women being diagnosed. However, when they present at their GP with all the typical womb cancer symptoms, they are often told they are too young to have womb cancer so the chance of early detection is missed.

We at Womb Cancer Support UK would like GP’s to take our symptoms more seriously. Most of us had problems with heavy bleeding, fibroids, polyps etc. for many years prior to diagnosis. Some of us have had polycystic ovary syndrome or have Lynch Syndrome in our families.

Womb cancer, like cervical cancer, commonly goes through a well-known pre-cancerous stage known as EIN :  Endometrial Intraepithelial Neoplasia  (Abnormal thickening of the womb lining). Statistically a woman with EIN is according to one researcher 45 times more likely than a woman without EIN to develop womb cancer.

Of course until there are definite biomarkers for EIN and womb cancer, it seems sensible to give at risk women a far better chance of earlier diagnosis of womb cancer. Surely it would make sense that if a woman is presenting at her GP with severe heavy bleeding, that she be monitored to see if she has EIN and if it increases or decreases.

The issue of younger women being diagnosed with womb cancer also brings up the fertility issue. At present many young women are being denied the chance of motherhood because of the pressure to have an immediate hysterectomy and/or cancer treatment. We would like to see all women of child bearing age being given details of all options available to them. In the case of early stage cancer it is sometimes possible for a woman to go ahead with a pregnancy before any treatment commences.

Of course, what we at Womb Cancer Support UK would really like to see is more research done into the causes of womb cancer which will then hopefully lead to a simple screening test.

Some of the recent media reports about women getting womb cancer because they drank too many sugary drinks; drank too much/not enough coffee; don’t get enough exercise; are too fat; etc. are not helping to raise awareness. They are simply trying to blame the patient for getting cancer.  I know of women who have never drunk sugary drinks, who ran marathons and are/were far from being obese yet they still got womb cancer.

The blame game has to stop. Instead we need proper research to find out the causes of womb cancer.  GPs need to focus not on stereotypes, which can be misleading, but on symptoms, which are very clear.  To be fair to GPs, they need rapid access to diagnostic tests.  It’s not rocket science that when symptomatic patients have direct access to specialists they are diagnosed with cancer at a much earlier stage.

And just as one-size-fits-all cancer treatment isn’t suitable for every individual patient, neither is the NHS standard test for womb cancer: one-size-fits-all quick, cheap and nasty outpatient hysteroscopy/biopsy with no pain-relief.  This test may be well tolerated by some fortunately tough patients but may prove a nightmare and a deterrent for other patients.

Womb Cancer Support UK (WCSUK) started out in April 2011 as an online support group for women who had or had had a womb cancer diagnosis. It soon became apparent that there was very little awareness of womb cancer so we try to raise awareness of the signs and symptoms as well as offering support and advice to women who have been diagnosed.

About the author:

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Kaz Molloy, founder of Womb Cancer Support UK, was diagnosed with womb cancer at the end of 2009. After treatment which involved surgery, chemotherapy and radiotherapy she became aware of a lack of dedicated support for women with womb cancer so set up an online support group in April 2011.

They now raise awareness of womb cancer as well as continuing to offer support and advice.

Kaz is married and lives on Isle of Bute, off the west coast of Scotland.

http://wombcancersupportuk.weebly.com/

Your support won the Government consultation for the Saatchi Bill

The strength of public support for the Medical Innovation Bill (Saatchi Bill) has persuaded the Government to offer legislation along the lines of the Medical Innovation Bill, following a public consultation to start in January 2014 and report no later than May.

The ministerial statement and press release expressly referred to the professional and public support that Michael Ellis MP and Lord Saatchi had received (read them here). Your support won the consultation.

As a result of all this, Michael Ellis did not propose the Second Reading of his Bill today, and the Bill in its present form will not be proceeded with this Session.

Public support has got us this far and now, as we work with the Government, a new stage of the campaign to encourage more medical innovation begins.

This direct chance for patients and their families to affect policy will stand or fall by the quality of what we say.

Now is the time to begin to consider personal experience of treatment, to think what might be made better for friends, family and loved ones through innovation.

The team are excited that we have come this far, this fast. Thank you for making it happen.

There is a long road still to travel, but we are on our way.

Photograph: ©Phalinn Flickr

Government agree to full consultation on Saatchi Bill

Read full statement from the Department of Health: http://t.co/Tvcbvf7cpf

Department of Health - Medical Innovation Bill
Department of Health – Medical Innovation Bill

WRITTEN MINISTERIAL STATEMENT
DEPARTMENT OF HEALTH
Medical Innovation (No 2) Bill
Friday 22 November 2013

The Secretary of State for Health (Jeremy Hunt): Medical innovation has been vital to the dramatic rise in life expectancy of the last century. This country has a proud heritage of medical innovation from Alexander Fleming and the discovery of penicillin to Sir Peter Mansfield’s enabling of magnetic resonance imaging.

The government should do whatever is needed to remove barriers that prevent innovation which can save and improve lives. We must create a climate where clinical pioneers have the freedom to make breakthroughs in treatment.

The Medical Innovation (No 2) Bill, sponsored by my honourable friend the Member for Northampton North (Michael Ellis), and the comparable Bill introduced by my noble friend Lord Saatchi in the other place, correctly identify the threat of litigation as one such barrier. Their hope is that legislation to clarify when medical innovation is responsible will reduce the risks of clinical negligence claims. Their argument is that with this threat diminished, doctors will be confident to innovate appropriately and responsibly. This
innovation could lead to major breakthroughs, such as a cure for cancer.

Their cause is a noble one, which has my wholehearted support. Lord Saatchi, in particular, is a great example of a parliamentarian motivated by conscience.

It is precisely because this issue is so important, because it affects us all, that we need a full and open consultation. A consultation that gets the views of patients on the right balance between innovation and safeguards. A consultation that hears from clinicians on the problems they face in innovating and how to overcome them. We are grateful to the hon Member and the noble Lord for their own work to understand and address these issues.

So the government commits today to carrying out a full consultation, working with Lord Saatchi and the hon Member for Northampton North. This will draw on the wide engagement and discussions that they have already carried out with the public, patients and the legal and medical professions. Such a consultation will enable an open debate on medical innovation, as well as highlighting its vital importance. The government expects to launch this consultation in January 2014 and to respond by May 2014.

My second commitment is that the government will seek to legislate at the earliest opportunity, subject to the results of the consultation.

We all owe a debt to the hon Member and Lord Saatchi for the great effort they have already expended on this issue. The government will work closely with them to bring this to a
satisfactory conclusion.

Read full statement from the Department of Health: http://t.co/Tvcbvf7cpf

 

 

The importance of innovation

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By Chris Lewis 

This piece has probably been one of the most challenging that I have ever written, because the subject can be so broad. Most of my writing is in the ‘cancer field,’ but I am going to write about some more general issues, and attempt to tie it all together by the end.

My first task is to define the word in simple terms, and this is the best description I have found. 

‘Innovation means doing something new, different, smarter or better, that will make a positive difference.’

As a self-employed business consultant in my life before cancer, I was always looking for solutions to problems. What could improve things, for both the business and the customer? Not all problems are solved by spending more money. It is often possible to make small changes to the way you do things, which can produce beneficial results. In many instances, it is very difficult for the people close to the business to either see or accept that change is required. That is where a fresh pair of eyes can really help.

Since cancer entered my life, it, and the treatment associated with it, have battered me for 6 years, meaning that I have been unable to continue my work. However, old habits die hard, and despite lengthy spells in hospital, I have been looking at ways to improve things in the current service.

The main thing that became obvious to me is that there is very little support, for people affected by cancer, outside the hospital environment. I was shocked to discover that! Before I got sick, I always assumed that the system would provide support for me where necessary. It is important to add, that I am not one for even asking for any help, but it would be nice to know if something was there for the people who may need it.

The fallout from a cancer diagnosis and treatment can be more damaging than the cancer itself, both physically and emotionally. Causing people to lose their job, partner, house etc and ultimately creating a downward spiral for that person. As more and more people are affected by cancer, this problem is increasing. Due to the fact that every case is unique, our previous approach of ‘one size fits all,’ is no longer appropriate.

Our population is so much more diverse now than it was even 20 years ago, and I am not convinced that our support reflects that. Different communities deal with these issues, in contrasting ways. Also we are only recently starting to get to grips with the different needs of young children compared to older people. How long has it taken for us to get to single sex wards?

Things have changed dramatically in recent years, and the way we live our lives is now totally different, with technology playing a massive part in that. However, when I look closer into the cancer world there are still many things that haven’t changed. One example of this is ‘support groups.’ I would like to start by saying there are some very good ones around. But mostly, they are run by volunteers, for people who are unwell. Not everyone can make a fixed monthly time, of course, and for some people, the last thing they really want to do is talk in front of others about their very personal issues. The attendance becomes sporadic, and after sometime they fold, mostly due to lack of support in running the group, or attendance drops due to lack of interest.

It is so important to start looking differently, at the way we deal with our healthcare, not just cancer. Ill health is not something that only happens to other people. Unfortunately it will happen to us all! We are now living in a 24/7 society, but, we don’t have a health service that reflects that! Our GPs rarely work after 7pm and at the weekends. Million pound machines lay idle, and waiting lists grow, as we struggle to accept weekend working. By the above definition, this would be innovation. (Working smarter)

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My business guru is Steve Jobs (Apple.) A recent example of innovation is the ipad. Jobs believed in it, when no one else could see where it would fit into the market, but his instincts were right, as by the middle of 2011, the iPad was proving to be a more revolutionary product than even the iPhone and the iPod. The iPod and iTunes changed the way people bought and listened to music. The iPhone changed what people could expect from their mobile phones. But the iPad was turning five industries upside down. It was changing the way consumers bought and read books, newspapers, and magazines — as well as the way they watched movies and television.

He was close to the market, and saw what the next trend might be and created it! He wasn’t afraid of criticism and was always looking to try new things. Today, we have technology to help us, but that is only really half the story. The biggest battle that I encounter in healthcare is that so many organisations are ‘closed’ to the idea of change. An air of suspicion is aroused. Red tape is thrown up to aid defences, and inevitably innovation is slowed. Ironically the welfare of the patient is cited as the reason that things can’t change! Excuse me, but things may improve if we looking at doing things differently!

People tell me that healthcare is not a business, but actually it is, just as charities are too! From my experience they can all be run ‘leaner and meaner.’ Innovation is something to embrace, not to fear! But until we learn that, we will always be holding back progress.

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Chris Lewis is an international cancer blogger, speaker, patient and mad Crystal Palace fan. Read Chris’ popular blog here: www.chris-cancercommunity.blogspot.co.uk and follow him on Twitter: @christheeagle1