Because of cost, a lack of information sharing across PCTs, or fatalism when it comes to hard to treat diseases people are not getting access to life-saving treatments available elsewhere in the world or even elsewhere in the UK. Below I’ve told a very personal story about a Pancreatic Cancer diagnosis and fight against protocol paralysis for the best treatments.
Maggie’s epetition, is something I support. IF she can get 100k signatures before 8th April it will compel the government to discuss the appalling lack of progress with pancreatic cancer innovation and diagnosis in the last 40 years. Maggie is incredible and I tell her personal story HERE (Update 17th August – She did it 🙂
Here’s why I formed this opinion;
My mother is a 69 year old widow. She’s also a fiercely independent self-employed business woman and a stranger to her doctor. At least she was until mid-July this year. She had a bout of acute abdominal pain and thought she’d better get it checked out. On 13th August, after blood tests and scans, she was referred to a consultant and told she had pancreatic cancer (PC). It was a very quick diagnosis by PC standards as Symptoms are vague and frequently, repeatedly, misdiagnosed.
If you were given no choice but to have some kind of cancer it’s unlikely you’d choose this one. 80% of people are inoperable when diagnosed, Over 75% of people die within a year, 96% within 5 years. Average life expectancy is 4-6 months. Statistics largely unchanged in 40 years.
Mum is better off than many. There’s a slim chance of an operation, one that increases the average 5 year survival rate by about 20-25%. Before that, the newest standard is chemo and chemo radiation (CRT) to keep the tumour controlled and hit floating cancer cells.
Treatment options that haven’t changed significantly in 40 years. Options that can come with brutal side effects like: a dramatically weakened immune system, vomiting, diarrhea, peripheral nerve damage, radiation burns, debilitating fatigue, chronic digestive problems, diabetes and anorexia. They are also woefully bad at helping pancreatic cancer patients. There is less than 5% chance of eradicating tumors and recurrence is incredibly high, hence the stats quoted for survival.
All I could do was throw myself into research and give her an unbiased look at what I found
Her initial referral to the specialist MDT was delayed by a bank holiday, so she chose to look for specialists on her own. Not a well-supported choice…. “clutching at straws”…”must be realistic“, in other words “Give up, go home and put your affairs in order”. Not an untypical reaction to a PC diagnosis. Luckily she is made of stern stuff and it made her more determined to fight.
With help from Pancreatic Cancer UK’s specialist nurses, she and I planned next steps. Near the end of 3 months aggressive FOLFIRINOX chemo, just after finding out her tumour hadn’t grown (ok) and hadn’t spread (great), we found a new treatment called Nanoknife (Irreversible Electroporation or IRE), only available privately at The Princess Grace Hospital, London.
Evidence said IRE could kill off cancer cells, without causing many side effects associated with other treatments. Probes inserted through the skin and placed around tumours deliver high intensity, short duration doses of electricity, punching microscopic holes in cells, damage largely reversible outside the target area. Great for PC patients as tumours typically grow near to or into major blood vessels, nerves and other vital structures.
Only 20 pancreatic cancer patients (more with other cancers and many more in the US) had been through IRE at this point. Mum had read everything there was to read and knew it wasn’t a cure. She saw it as a less damaging, more direct way to have a go at the tumour, complimenting standard treatment. Then we talked to our doctors.
Cue immediate, forceful objections.
It was a shock. All objections apparently hinged on the fact it is non-protocol and new. Evidence of efficacy outside the UK is good and growing, but there followed lots of uncomfortable, and in some cases downright inaccurate objections. After going back to her research and speaking repeatedly to IRE specialists, there were few relevant clinical concerns outweighing potential benefits, bearing in mind her prognosis.
The whole thing felt unfair. Weeks of conflict while she battled the side effects of chemo, struggled alone to distinguish between protocol paralysis and clinical objections and worried the battle would destroy her relationships with her doctors. It felt like the system let us and possibly them down.
Anything new tends to be very unpopular with hospital boards. Not least because of the Bolam test (The “Is the doctor acting in the patient’s best interest? question), got a damaging shake up in the wake of the Harold Shipman trial. It can be an uphill struggle to prove good intentions and avoid negligence charges if a doctor strays from standard practice.
Some people will disapprove of Mum’s choices. The point is she had some. Unlike many others either unwilling or unable to withstand a similar fight. Whatever the future brings for Mum, she’s pleased she’s now part of the evidence. Evidence that might prompt more research* and new trials that may lead one day to NICE making this freely available.
Many patients with hard to treat diseases are willing to take a chance that new things might cause harm, not work, or only offer a couple more good months. When you have a prognosis of less than 12 months to live and current treatment options have been exhausted, you need to be able to take any chance available with support to weigh up the risks.
A shocking fact is that children are disproportionately affected by this issue (Harrison’s heart-breaking and inspirational story), because many, many trials exclude under 18s. Understandable in one way, but the treatment, if approved is then not approved for use on children. If you are a parent imagine being in that position. Fighting with every ounce of strength for your child, finding something new that may help, then being denied access to it, for what boils down to administrative reasons.
We need to be allowed to take a chance on non-standard treatment if standard treatment is failing us and retain the support of doctors if we do. The alternative? Thousands more people being told to “Give up, go home and put your affairs in order”?
To quote my mum “It might not work and something unexpected could happen, but if no-one bloody tries it how will anyone know?”
Update 17th August – Guess what!? She only went and did it 🙂
Over 106,000 people signed Maggie’s epetition and the debate has been scheduled for Monday 8th September. Here’s hoping MPs grasp the importance of the debate and throw their weight behind necessary changes.
On 18th March our lives changed again and sadly not for the better. I’ve continued our story here: