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Richard Branson and kissing frogs

2 Oct

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“Hello, I’ve have had some very bad news. On Monday I was told by my consultant that not only has the cancer returned its spread to my pelvis and there isn’t a lot more they can do for me, therefore I am now terminal” Michael, 54, bowel cancer patient

“I had a meeting and scan on Friday.  Not good news major spread in the liver and other places. We agreed no more chemo.  It looks like it’s taking hold now” Tony, 50, bowel cancer patient

I really hate bowel cancer.  During my first few days back at work after my long summer break I caught up with my patient friends. Three recurrences, one told now inoperable, one with just a week or two left, three with spread, several with severe reactions to chemo.  Desperation, despair, occasionally acceptance. Bugger.

What makes this harder is that really bowel cancer should be a good news story. It is one of the most treatable forms of cancer.  If it is diagnosed at its earliest stage you have a 93% chance of surviving.  However that can be difficult to achieve for a host of reasons including:

  • low levels of awareness leading to patient delays in seeking advice;
  • GP delays in referring for diagnostic tests because it can be difficult to identify who to refer;
  • low take up of screening and the need for a more sensitive (and easier) screening test:
  • poor surveillance programmes for those at highest risk.

At Bowel Cancer UK we are working flat out to address some of those issues – we run awareness programmes, we train public health and health care professionals, we promote screening, we campaign where we see issues that should be addressed, we provide information and support to people affected by the disease. At the same time we are carefully monitoring and evaluating what we do so we can do it better and share our learning with others. Yet we are still hampered by our lack of scale.

Sir Richard Branson

The need to grow the charity has led to my developing a mild obsession with transformation, change and money!  I’ve started to study the habits of wealthy entrepreuneurs and successful businesses to try and figure out how they made the breakthrough that led them to success, money, influence. I’ve felt vaguely re-assured by the hard graft so many describe prior to take off but I can’t help but wonder what Richard Branson would do if he were CEO of Bowel Cancer UK?

Don’t get me wrong, it is a pretty healthy obsession because all I want is to enable Bowel Cancer UK to do more, for more people. Yet after 22 years working in the voluntary sector I’ve come to realise that money is the charity workers curse.    We don’t have gadgets and gizmos to sell (usually), we only have our issue.   I’m selling an opportunity to be part of saving lives.  Sometimes I’m gobsmacked that it’s such a tough pitch, that so few seem to want to buy into it.

Bowel disease study day

It’s particularly frustrating when we know that there is a real need for what we do – the patients and their families I speak to every day are a constant reminder of that.  I also know that our work makes a tangible difference. For example the independent evaluation of our recent pilot GP study disease days in Birmingham and Manchester commissioned by Cancer Research UK showed that 92% of the GPs attending intend to make positive changes to their clinical practice as a result.  That’s good news as we wanted to support GPs and provide them with the opportunity to consider their practice and to make changes where needed.  Yet we struggle to find the funds to run them.

In our joint Train the Trainer programme with Breast Cancer Care we trained around 100 health care professionals in areas with high incidence and mortality of the disease and the evaluation was fantastic.  It showed that trainees knowledge about and confidence to share information /raise awareness was dramatically increased and as a result they went on to reach over 10,000 people and that number continues to grow.  Clearly this is positive yet the fundraising process to get the necessary funds to run them is long and arduous and there is no guarantee of success.

Never Too Young banner

We are having influence too.  We have worked hard to ensure there is depth and substance behind our Never Too Young policy recommendations and are fortunate to have the support of leading academics and clinicians.  Yet to turn those recommendations into practice requires money to fund the necessary research.  Bids of course have been duly written and submitted and now the agonising wait begins. What a waste of time.   After all, people are dying and this might help change that.

Most days (and too many nights!) I wrack my brain to try and work out what we need to do differently and I am always on the look-out for ideas and open to advice and guidance.  Of course it’s in the wee hours of the night, the self-doubt and self criticism bites and there are times when I long to run away and work in a Cotswold tea room.  When I dream of clarity and simple transactions… you want coffee…here it is.

Yet I just need to think about patients and their families and the impact of losing someone you love and my own feebleness melts away.

My friend Neil, who lost his wife Lindsey to bowel cancer, described it to me so movingly.

‘The whole journey of losing a partner and best friend is very odd. At first the shock protects you a little.

Then you throw yourself into work with unbelievable mania just to avoid thinking about it.

Only now 10 months on has reality kicked in. The loneliness is awful, the sense of there being no purpose to anything any more is high

I am sure this is all part of the process but it is such a painful part

But I am ok – really I am’

I feel such anger that people are going through this and I am bored rigid by steady incremental growth. We need step change.

What makes it feel more urgent is that in my re-networking of the new NHS in England it appears that many politicians and key decision makers in the new organisations have moved on or at least distanced themselves from cancer, as their budgets have shrunk and their portfolios expanded except for where there are big headlines.  Yet many of the changes required are not news grabbers.  For example, increasing endoscopy capacity isn’t really media sexy but it might enable us to detect people quicker when treatment is more successful, yet who is prioritizing that?   Well we are.

Today around 43 people died of bowel cancer and tomorrow another 43 will die and the reality is that many of those deaths could have been prevented.  That’s why money and transformation is so important – to ensure we can dig deep and find meaningful sustainable solutions.  This is definitely not the moment to move on and give up.

Oh dear, I guess the tea room will have to wait and I will just have to keep hunting for that breakthrough moment and ‘kissing frogs’  just in case one turns into a generous benefactor.

I also better finally settle on a new fundraising challenge – it isn’t the solution, but right now every penny helps.

Star of hope

“Never doubt that a small group of thoughtful, concerned citizens can change the world.  Indeed it is the only thing that ever has”

Margaret Mead

If you would like to donate to Bowel Cancer UK you can do so online via our website  www.bowelcanceruk.org.uk or visit my Never Too Young  JustGiving page: www.justgiving.com/deborah-alsina

If you are experiencing any symptoms of bowel cancer, please tell your GP or call our nurse run information and support line in confidence on freephone: 0800 8 403530 or email support@bowelcanceruk.org.uk

Bowel Cancer UK aims to save lives and improve the quality of life of anyone affected y bowel cancer

Bowel Cancer UK aims to save lives and improve the quality of life of anyone affected y bowel cancer

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