Brassed off?

Bamburgh beach and one very happy dog!

We can reminisce fondly about times portrayed by Call the Midwife, when nursing and medicine appeared at least to be more family centred but lets be honest with ourselves, these were not times to be ill. Even when I first started nursing if you were unfortunate enough to have significant arthritis, your life was defined by disability and pain and on many occasions you would be housebound and largely immobile. Asthma over a lifetime lead to chronic obstructive airways disease and permanent wheeze. Heart failure too kept people housebound and immobile. And we never spoke  of cancer survivors, only one outcome was anticipated. Even Type 1 diabetes was a terminal disease until the 1930's.

Modern treatments have made a huge difference. I have the privilege to be working temporarily with Arthritis Care Scotland as Interim Director just now and am inspired by young people with rheumatoid arthritis achieving so much in their lives and older people having their lives transformed by joint replacements, only dreamed of years ago. And as Director for Breakthrough Breast Cancer  I saw many after treatment for cancer return to their lives and be reassured by survival statistics.

BUT those stories and statistics hide a huge amount of pain both physical and emotional, they don't talk of the compromises made in order to keep going, to remain positive.

What is seen as a medical breakthrough is rarely without its complications, without its side effects which become part of the pay off. And I do understand that for many, that is well worth the side effects to rid yourself of debilitating wheeze, to thrive with diabetes, to decrease pain, to rid yourself of cancer; for the healthcare team it's job done, for the person it's just beginning.

It's no coincidence that Arthritis Care have been pioneers in self management because they know well that surviving a life with constant pain is about more than painkillers. It's about many different coping strategies and a mindset to enable you to care for yourself. It's hard, hard work that many of us would find difficult to contemplate. And the work of the charity is to support people to do that, it's impressive in its range and ambition but no one pretends its easy.

And it's not just about medicine as any of us know who live with any long term condition. Just this week research in the US showed that people are significantly more likely to be unemployed after a breast cancer diagnosis and if their treatment has included chemotherapy their incidence of unemployment is even higher. Social factors need to be considered when treatments are planned. Apparently the UK is now climbing out of recession but in a time when we have more working poor than non-waged poor and the use of food banks are rising exponentially, then any illness and treatment that threatens your income and employment will be a significant stressor. These are some of the unsaids in cancer treatment and long term conditions. Depression is a common complication of many conditions and yet it's often unreported, held as a shame by those experiencing it. They are lucky after all, it was so much worse before, wasn't it?

What makes social media so powerful is that many online communities such as the breast cancer #BCSM and blogs like Marie's Journey Beyond Breast Cancer are blowing some of those myths, survivors are telling their stories and more is being understood as a result. But is everyone listening yet? I'm not sure they are. Charities often play an important role in amplifying that voice but may still be seen as peripheral to care and support. If we want to make care more person centred then we need to listen more and assume less. The voices are out there I know they can help please let's start listening to them.

Reasons to be grateful and mindful.

We had a lovely week of beach walks in Northumberland and special family time last week. It was wonderful. Also on May 1 I went to see Brassed Off at the theatre in Edinburgh. It's a production to commemorate 30 years since the miners strike. May 1 would have been my Dad's birthday and as an ex miner who cared passionately about the people in the industry, it was a poignant way to remember him. The music was wonderful and the playing of Danny Boymy undoing. But the speech here from the film Brassed Off, carried the powerful message I remember most. The human impact of political decisions the theme. An important reminder for us all isn't it?