This week I was invited to the Houses of Parliament to speak at the inaugural meeting of the All Party Political Group (APPG) on Blood Cancer. It was a great honour.
I’m not sure it would be entirely fair to document the entire proceedings; the secretariat, Bloodwise, will be documenting the detail in due course. I can say that we heard from the Parliamentary Under Secretary of State for Community Health & Care, David Mowat MP and the meeting was chaired expertly by Henry Smith MP.
The ultimate aim of the APPG will be to conduct enquiries into blood cancer-related issues. I believe that the first enquiry will cover how well (or not so well) the national cancer strategy is working for blood cancer patients (given their specific needs). This would be a great place to start and I applaud the approach.
Kris talking at the APPG on Blood Cancer
Kris with the Leukaemia Care Team (Zach and Monica)
Kris and Ben
There were a number of people representing various blood cancer organisations and charities and I hope that we can all pull together, with our parliamentarian counterparts and make a real difference to the lives of blood cancer patients. I’ll keep you posted.
I’ve posted my speech below, it’s not every word but I’m sure that you’ll catch the gist.
All of my best wishes, Kris (Griffin)
SPEECH – Wednesday 18th January 2017, House of Commons
Thank you for inviting me along today. I feel very honoured to be in such distinguished company and to be able to provide the room a patient voice.
It’s been 10 years (next month) since my CML diagnosis.
As you can imagine I’ve got many stories to tell about my blood cancer…not all of them bad…
Whilst talking this speech over with a good friend, we discussed a number of things that have happened to me that I could share with you. Not necessarily all bad.
Three CML anecdotes: bat ears, sperm banking, grapefruit.
No, probably best to leave the funny stories well alone, get on with the more serious stuff.
So, I want to tell you about the lad who was helping me out cutting a hedge down in my garden. We had a conversation. I told him that I had leukaemia.
And as he ran down my drive he shouted back, “CAN I CATCH IT?”
The problem is, people just don’t get us. The trouble is that it’s not just about taking meds anymore.
My feeling is that with CML being a treatable disease (or controllable), our needs are very different to many other cancers. I don’t believe that the health sector really understands us. Not because they are uncaring, but because we have moved so fast and so far forward.
When our treatment goes well, our wellbeing needs to be looked after and managed. There is a psychological impact of having a cancer diagnosis. Some people manage this better than others. But, this is an invisible problem for us. As we start to treat other blood cancers in a similar way, these are issues that need addressing more and more. It’s why I constantly bang on about personalised treatment. A personalised approach does provide the best outcomes and the best quality of life. I’m sure we can all agree that this is the aim.
Because if we get it right, the economic impact is huge. Potentially you could have people who previously were unable to work, now able to work. 40% of them may not be receiving any treatment at all. 20% (and growing) may be taking generic drugs which are much cheaper.
We are trailblazers and I treat my disease like a superpower. It opens doors and allows me to help people, to ensure that they are represented, to provide a voice. I work everyday and am kept on my toes by an active 5-year-old.
Even though blood cancer is the fifth most common cancer, there are 250,000 people (and growing) living with it in the UK…it’s hard to define…too many types and generally nothing to cut out.
And whilst the treatment for CML…and some other forms of blood cancer are getting more straightforward and successful…we can be in danger of forgetting that there is a real person behind each diagnosis. We forget that people can react differently to news, information, approaches and misinformation.
When I told the members of the CML-UK Facebook group I was speaking today, many of the 2,000 members replied asking me to mention a variety of subjects. I’ll do my best to represent some of those views now:
No consultation with patients. No formal information. But, imatinib patients are expected to simply switch tablets and accept what they are told…this after being told that patient power is a good thing. What about the months, sometimes years of getting to a good place only to be told to start again. No official reassurances. I’m still waiting to hear if you can go back to a drug that previously worked for you. MUST DO BETTER.
The psychological scars run deep, as deep as any cancer patient. But, we are the ones with invisible problems, different needs. CML, in particular, is a disease, that doesn’t necessarily have to destroy your life. If the tablets go down well, carry on. I’ve not missed a day of work through CML since diagnosis. So, empower us. We can be your support network. Take a look at the Bloodwise Ambassador scheme and the CML-UK Facebook group for evidence of burgeoning, useful communities.
There are people in the medical profession who still don’t know enough about blood cancers. I know that Leukaemia Care is trying to address this. Just some basic awareness. I was diagnosed by accident, many blood cancers are. If my GP hadn’t been curious…I wouldn’t be here now. Which leads me to…
Many employers don’t get it. Many patients WANT to work and yet outdated, overly bureaucratic business practices stops them. How can you have cancer, you haven’t lost your hair? And many patients who are unable to work because of devastating side effects, cannot access the benefit system because CML is a “treatable” disease.
There are some travel insurance policies that we can get. But not life cover. Why? Exclusions? They use the wrong data!
Many traditional cancer patients can get cover after being clear for a number of years. But us? No. Ongoing treatment. And no one wants to listen.
LIVING ON THE EDGE
No matter how many times you’ve gone through it, no matter how robust you are, no matter how long you’ve been undetectable. When you go and pick your bloods up, it still feels like you are rolling the dice. And that, every three months, every six months. In many cases, for a lifetime. It takes some getting your head around.
On one hand, we should congratulate ourselves, we’re getting our head around the science and as for CML, it feels like a winnable battle. But there are many types of blood cancers and we have to keep pushing hard on all fronts.
Blood cancer patients are the front line. In my lifetime I want to see most cancers treated in the same way that my cancer is treated (or better). Many of you have played a part in the journey so far and are certainly responsible for getting the right drugs and treatment to the right people at the right time.
Let’s make sure that these patients are empowered. Let’s not leave them to fight other battles on their own. Let’s fight for their employment rights, look after their well-being, consult them on changes, find insurance and keep breaking walls down.
I’m incredibly grateful that we now have an APPG on Blood Cancer, it has already brought together some fantastic people, here in this room. But, please, let’s keep patient needs central to the agenda.
It is serendipitous that, when my journey started, 10 years ago, after a long walk, Sir Ian Botham told me that I was going to be OK.
He was right. I feel more confident today than I was yesterday, passing the message along and telling my fellow blood cancer patients that it’ll be OK.
That’s what matters. Thank you.
Kris Griffin speaking at the APPG on Blood Cancer