An opportunity to think differently?

                      "In the middle of difficulty lies opportunity" Albert Einstein

If I'm honest I have hesitated before writing this blog. Talking about access to medicines is politically something of a hot potato. And if there is a ,on the face of it ,a difference between England and Scotland its a case of light the blue touch paper and stand well clear. But it's important we explore the issues away from party politics but as a necessary question for contemporary health and social care. And this blog is my personal attempt to widen the discussion.

When we set up the Long Term Conditions Alliance in Scotland one of the first things we looked at was access to medicines and in particular prescription charges for those with long term conditions. There were huge anomalies with people with conditions like diabetes being eligible for free prescriptions ( although not if treated with diet alone) whereas those with asthma or arthritis for example had to pay. I worked with Diabetes UK then but felt it was important to argue for a principle of equity. And when I then moved into the cancer field it similarly felt too simplistic and self serving to only argue for better access to cancer medicines; having no appetite for a "my illness is worse than your illness" argument.

 The return to free prescriptions in Scotland has created the opportunity for people to have  better control of their long term conditions, with less angst ridden conversations at pharmacies, people no longer having to ask "which one is really necessary" when presented with the bill. Of course it's controversial like any universal benefit. But ultimately if it has enabled people to self manage their condition better and that's good news all round at both a personal and economic level.

So it is right that it shouldn’t be the individual who is concerned as to the cost of their prescription but while the prescriptions may be free, the treatments are not.  We still hear tales that some people aren't getting access to the treatments they need in an equitable way.  How widespread this is, is very hard to know. I welcome that systems are being redesigned, especially being   made more open and accountable. I welcome that debate is happening. But I wonder, are we having the right debate yet? Whatever the process is, one of the questions needs to be how much money is in the system to meet the need now and  even more in the future?

Person centred healthcare means not only designing services around the person but also increasingly it's about more and more personalised medicine too. The recent discussion about genetics and breast cancer is the tip of the iceberg of the discussion we need to have to understand the implications of personalised medicine. Targeted therapies mean they can be tailored to need but profits from the drug that benefits all are different from the one that benefits a niche group only. Is the impact on price therefore inevitable perhaps?

What does that mean for cash squeezed healthcare systems? Rather than solutions that rob Peter to pay Paul do we need to have the debate about how much we each are willing to invest in our health system? Person centred approaches mean that when people are fully informed about their options when the chips are down, they make different and individual decisions. One cancer patient declining treatment, prioritising their quality of life  while another's goal is to prolong life at any cost, giving them precious time. But we have new drugs in the wings for many people offering potentially fresh choices. And who of us will want to risk being denied the choice of treatment should the time of need come for ourselves- or those we love?

So are we willing to tackle this challenge in fresh ways?  Are we willing to pose the difficult questions? Like exploring if we are willing collectively to pay more for our healthcare (and not in a way, like prescription charges, which simply charges for illness)? And are we willing to discuss an open approach to rationing as costs rise and whats available to invest doesn't? Would increased taxes for example be part of the answer to ensuring that the best care and treatment is available to all equitably?  My prescription is : let's have the real discussion we need to have, about how much as a society we are willing to invest, to change, to do differently in order to have world leading quality health and social care for all?

Reasons to be heartful.

These wild flowers were plentiful on a walk I did recently with a  really special woman who has been walking around Scotland to raise funds for Breakthrough Breast Cancer. I loved joining her for a short time, walking is such a symbolic transition and this recent time has been about transitions for me in lots of ways. Like the weather I feel I have come around a corner to see the sun shining. Hope it has for you too.

Not just Angelina

As someone who never does well in the celebrity section in a quiz and who declines the celeb mags at the hairdresser in favour of the newspaper I have found myself, perhaps surprisingly, very moved by the Angelina Jolie story this week. I can't recall ever seeing one of her films but such is her celebrity my daughters first two goldfish were named after her and Brad! As a wee freckled Celt her olive skinned statuesque beauty is something I can only look on with awe.

Working in an industry which as we know places beauty and youth above so much , especially for women, is not easy in the best of times. And learning you have a faulty gene that puts you at very high risk of breast cancer and ovarian is certainly not the best of times. Living with the knowledge of that risk has a massive impact on those affected. The fear is omnipresent. And so she made a choice to reduce her risk that resulted in a mastectomy of both breasts and reconstruction surgery. Psychologically that's a huge decision and physically it's impact should not be forgotten. This  is massive surgery and will have taken its toll. She has shown us she is so much more than her beauty, her body, her breasts....she is an empowered, informed, woman and perhaps very importantly to her, a mother. She knows how it is to lose a mother long before her time. And she has dared an industry who judge women harshly to risk treating her differently.

I remember crying quietly when I learned of Linda McCartney's death from breast cancer. A woman  I never really warmed to. She wasn't even married to my favourite Beatle ( that would be George) but I guess what I did know is that she was a committed mother with much to live for. And her wealth couldn't save her. My tears not just for her but for the rest of us for whom money might not be enough to save us too.

Yes Angelina's wealth will have helped . In the US she will be seen as fortunate, many will  wish 
they could afford to be screened and have the option for risk reduction too.  But they will not have the
 kind of insurance that would allow that. In the UK those who are at high risk can make those choices without the worry of cost. But they do have to factor in the impact on their health and wellbeing.

There are studies too that look at tamoxifen as a preventive option. That's the same drug that many with a diagnosis of cancer stop taking because of its side effects, too lengthy to list here. Not much of an option is it? Regular screening is also an option but can only identify an early cancer with ensuing physical and psychological Impact. Reconstructive  work on a breast that has been treated for cancer can be much less successful. There are no easy answers here, yet.

I'm so glad that Angelina has taken this decision from a place of health, empowered to make the right choice for her. I welcome her honesty on behalf of others. And the ensuing debate about making these tests more affordable for others too. But let's not forget what we really need are far better 
options for people in this situation. Investment in research and collaboration to understand more fully
 how to prevent the disease has to be the best option for the longer term. And therefore better options than an are more available to frightened young women than this. 
They all deserve better.

The wisdom of patients...and carers.

Don Berwick: 'One of the most important guarantors of continuing excellence in the NHS is the ability to include and invite and listen to the wisdom of patients.'

It's been an inspiring week. I have heard some challenging and inspiring talks, had wonderful conversations, met some great people and touched base with old friends and new. I may be exhausted but its been worth it.
That's not only because of good outcomes but its also about spending time with good people. My new role is so much about connection and that's why I really enjoy it.

When I first left clinical nursing it was the connection with patients I particularly missed. That sense that you had made a difference to someone is often very immediate as a nurse. Its the thing that helps you deal with the emotional cost of the role. The power of the connection dependent on empathy,  respect and a deeper listening. It needs the right context too to flourish.  If as a clinician you are stressed through work pressures, illness or other external issues its hard to invest in a therapeutic relationship.

It's often said that people have to experience something to truly understand the issues for others. But does it really? After all we are different in our response to life's challenges so what I know about me can be in the way of what is another's truth. It's why self awareness is a fundamental part of the toolkit of the helper. Knowing where your experience and another's differ. But connecting to your own deeper understanding does help you be able to go there with others.

What being on the receiver end of care has helped me understand though is why    when your care is not person centred it is easy to disconnect. I hadn't understood before why people sometimes didn't  attend follow up. But  then when you wait hours in a follow up outpatient clinic to be told you are fine, without any exploration of what fine would be for you.  Nothing about how your life has been impacted on, simply about how a scar has healed...the visible ones at that. Yes I understand how it feels not to want to go back.

But my more recent diagnosis in a unit which is so focused on the person, my follow up has become a touch point for reassurance, talking through my options. Yes it can be the time when the journey might begin all over again...another mammogram showing recurrence but I know they will support me, care for me, do their best to see it through my eyes. Demonstrate empathy throughout my care. It's the fundamental difference between a good and bad experience of care. Securing that for everyone is something worth fighting for.

Reasons to be heartful.
I spoke to so many people this week so passionate about improving care for all I really do believe the time has come for change. And some cat and dog empathy is emerging in the Birt household. Moments of affection being observed. Breakthrough in team!

For mothers and daughters, wear your support.

When I joined Breakthrough Breast Cancer I looked forward to Fashion Targets Breast Cancer. Shopping for a good cause has a certain appeal-excuses to buy nice clothes I don't normally need. The fantastic photos of the celebrities supporting the campaign have offered iconic images over the years. One that stood out for me was Kylie wrapped in the image of the target, the emblem for the campaign. Her beauty and fragility in that moment captured for ever.

I was the same age as Kylie was when I was diagnosed with breast cancer for the first time. OK I know that's where the similarities end...my backside will never look like that! But I have recognised her reluctance to be defined by her cancer and then her courage when she has acknowledged it too. She hasn't pretended it didn't have an impact but she has also demonstrated her beauty and talent are in no way diminished.

This years fashion targets campaign has a focus on mothers and daughters. The stunning images of Sharon and Kelly Osbourne and Pearl and Daisy Lowe shine out from poster stands across the UK. As we know Sharon opted for a bilateral mastectomy after identifying her genetic high risk  of breast cancer. A brave decision which must have had a huge impact on her daughter too. As part of a  BCCEU tweet chat recently I asked the assistant director of research for Breakthrough Breast Cancer , Julia Wilson (@jul-wil)what reassurance could she give families in the future. Her reply was "our commitment we are ready to pick off different types of breast cancer one by one and stop mothers and daughter dying".
Campaigns like fashion targets may seem at one level glamorous but that's not what they are about.....they are to bring much needed funds into this work. So I will be wearing my support this year again. Here's more detail about whats on offer.

My family like many others has felt the impact for mothers and daughters. My step daughter, my daughter and I did the Edinburgh moonwalk a few years ago, less than a year after my step daughters mother had died of breast cancer. A poignant midnight trudge through our beautiful city, our hearts heavy with loss but strengthened but with that shared purpose. The sight of my son as a volunteer helper throughout the night brought tears to our eyes, as did the greeting from their Dad at the end.  Fathers, sons as well as daughters all feel the impact after all.

Reasons to be thankful.
I will leave you with the image of this particular mother with her daughter who is thankful everyday still to be here, 19 years after breast cancer first invaded our lives and also after its impact a second time. That's the result we want for everyone, so do wear your support, the money is well invested....in saving lives.