When I ask my friends how their work is going the most popular response is “same s..t different day!” Working in the area of cancer support, I now experience that. The people are wonderful, so no problems there but when talking to those who are well paid to find solutions in the sector, I am hit by a terrible feeling of deja vu. Professional conferences that cost a lot of money, all take a very similar format. Guest speakers, PowerPoint slides showing that things will be better in the future. There are generally very few patients invited to attend, who are then made to feel grateful for what they receive, from whichever organisation is running it.
Every year we are promised things will be better. The analogy I can use here is like waiting for our national transport infrastructure to improve. It is always a few years more, and 2020 looks favourite here for everything! Each time we get the same promises and answers to the same questions, costing millions of pounds for the giant circus and PR exercise to continue. There are ever revolving doors in politics and the charity sector, meaning nothing effective really happens in the longer term, as the staff continue moving around. I have seen recently that my friends at Macmillan Cancer have had a shakedown and several of their ex employees are now in senior roles in the N.H.S. Thus ensuring that the tight relationship with the large charities is strengthened, leaving no room for different organisations and fresh ideas.
This is total madness in a world of sparse resource. If this was a business we would be bringing fresh faces in to speed up the process. But no, the same faces appear in a newly created role, having the same level of impact. The whole sector needs a complete shake up, root and branch! The answers are there but politicians and healthcare giants will not engage effectively with patients! Below is a piece written by the incredible Julia Tugwell, who attended her own meeting recently.
“50% of people diagnosed with cancer will now survive for 5 years or more. That means that there are a lot of people living with the after effects of a cancer diagnosis and treatment. This is very expensive for the NHS and unsustainable in it’s current model. Yesterday I was at a meeting in London working on the almost final stage of a process to get over 3,500 questions submitted by patients, carers and health professionals down to a top 10 that will be open for cancer charity funders to hopefully take on and try and answer.
The questions were varied, obviously, but many had a common theme which was around mental health aspects rather than physical health. The mental aspects of cancer can never be underestimated. I still hang out on some online support groups and the fear, anxiety, stress and hopelessness of the newly diagnosed is often shared. I can empathise totally because I’ve been there. Scared, totally shit scared, that I was going to die. It’s a peculiar place to be. Now with the benefit of hindsight, time and a little detachment I can offer some support to those living in that dark place, the darkest place usually being straight after diagnosis before a treatment plan has been decided. Another key point where mental health can take a nose dive is when active treatment stops and you are cast away from the care of your medical team to ‘go and get on with your life’. These feelings are common over all cancer types. Questions around follow up, ongoing care, rehabilitation were other common themes.
What struck me yesterday is that however much support charities offer, and there were reps from two of the ‘big boys’ there yesterday, most support is offered peer to peer, online, on instant forums such as Facebook. The big and not so big boys offer online forum support but this is, in my experience, like waiting at a rural bus stop, rather than waiting for a train at Waterloo. They have many rules, of what you can and can’t post, you have to log in with passwords and create accounts, therefore if you are not actually there looking for support you are unlikely to pop in to be able to offer it.
So who runs these Facebook groups? In my experience they are run by unpaid, highly knowledgeable survivors who probably know more about their specific cancers than any non medically trained charity worker. They are the unsung heroes of the support world. You know who you are.
Wouldn’t it be amazing if the big boys of cancer support paid these people? Gave them grants to do the work that they know to be needed? Rather than creating yet ANOTHER expensive report or booklet that doesn’t filter through to clinicians let alone patients. Many of the questions from the original survey had already been answered, at huge cost, yet many patients and clinicians were still asking them. Something is going wrong somewhere.
There were 4 patient reps at the meeting yesterday, along with big boy charity reps, NHSEngland, and clinicians. We left the meeting pleading with them to make sure that if answers to the final questions are found could they PLEASE be in a format that creates actual change and action. Or give us the cash and we’ll get on with it ourselves!”
All this is just ridiculously common, and such a waste of time and money! Why can’t there we a transparent and open dialogue instead of everyone on a giant ego trip about who knows best? At the moment, those running cancer services in this country do not know best.
These opinions are not just mine, but are coming up time and again. Please feel free to add to the discussion below.