#Kris10, Mission Complete

I suppose that I should have written this before I hit the target but it felt a little presumptuous.

I now struggle to find the words to convey the joy and relief I feel in hitting the £10,000 #Kris10 target for Leukaemia Care this morning. Thank you is a good start.

It’s taken nearly 11 months and it’s been really, really difficult. The walk and the recent Big Finish auction pushed us hard towards the line but there have been plenty of moment where I felt that I’d bitten off more than I can chew. It’s hard not to take things personally especially when the cause is something so personal. I’ve developed some thicker skin and a newfound appreciation for professional fundraisers. In fact, I just don’t know how they do it, it’s an incredible skill.

Nearly 11 years ago I was diagnosed with leukaemia but you know that story. The story now is about supporting people who are diagnosed with a blood cancer today, tomorrow, next week… Treatment options are improving and we’re making inroads into earlier diagnosis. There is a huge psychological impact on the patient after diagnosis and the emotional impact leaves lots of damage. Leukaemia Care do an incredible job supporting patients and families with the seismic shift a diagnosis brings and this money will make a difference.

Is there a better Christmas gift? We’ll save lives with this and given that you are reading this you are likely to have been part of this story and I genuinely can’t thank you enough for your support.

There’s always a long way to go; work like this will never end and our relentless commitment to making people’s lives better is worth it.

So, take the baton, run a marathon, jump out of a plane, fly down a zip wire or sit in a bath of beans. Go and write your own story. I’m done for now. It’s nap time. Happy Christmas.

www.justgiving.com/kris10

Birthday Thanks

Just a huge note of thanks to everyone who donated and sent birthday wishes. I raised £343 towards my #Kris10 campaign. That’s a lot of socks and pants.

We’re fast approaching £2,000 and we’ve taken a step closer to that HUGE £10,000 target.

Never too late to donate. www.justgiving.com/kris10

Big thanks. Kris.

Happy birthday to me!

Happy birthday to me, happy birthday to me, Happy birthday dear me, happy birthday to me.

That all sounds rather self-congratulatory but I’m using my birthday as a weapon to raise money so I’m vindicated, forgiven and a year older.

Ten years ago when I was diagnosed with chronic myeloid leukaemia (CML) I wasn’t sure if I was going to live to 33 and now ten years later, I’m still here age 43; pretty good at maths too!

To celebrate the ten years since diagnosis (or as the Bee Gees would say, Stayin’ Alive), I’ve set myself a challenge to raise £10,000 for Leukaemia Care, the Worcester-based national charity that I’m a trustee of. The money will be spent training more GPs about the signs and symptoms of blood cancer. It will save lives.

So instead of showering me with gifts and cards this year, I’m encouraging you to throw money at me. That’s right, I’m making the ultimate sacrifice and giving up my birthday. No new socks and pants this year but we all get a warm and fuzzy feeling for doing the right thing.

Also, I got a target to hit, that £10,000 isn’t going to raise itself. So, join me, in wishing me, a happy birthday. Donate at www.justgiving.com/kris10 or text KTEN99 £5 to 70070 to donate £5.

All together now…for he’s a jolly good fellow…

(Another) open letter to Dr Fielden: generic imatinib

I don’t take any pleasure in having to follow-up letters that haven’t been replied to, especially letters about something so important. I also dislike having to copy senior people in to force a reply out of someone, it feels childish and wastes time.

But, I’m left with no other option. The letter speaks for itself and I’ve linked PDFs to the two letters that have gone unanswered. I hope that this provokes a dialogue that reassures patients about the generic process. Thanks, Kris

 

Dr Jonathan Fielden
Director of Specialised Commissioning – NHS England
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17^th March 2017

Dear Dr Fielden,

RE: Imatinib – your reference JF 16-1201.1

Sorry to have to write again but it has been a month since I asked for a swift response to my letter dated 16^th February 2017. I should also note that the reason I sent the letter in February is because I didn’t receive a reply to the letter dated 21^st December 2016.

I am concerned by your lack of communication and so are the CML patients that I represent, numbering around 2,000. I have copied the Secretary of State for Health, the Chief Executive of NHS England and my local MP who I hope will encourage you into dialogue with me. I have attached my previous communication and if need be my local MP, Mark Garnier, will vouch for my credibility, he is aware of my advocacy and has been incredibly supportive over the years.

At a time when you are expecting blood cancer patients to make significant changes to their treatment, I am appalled by the lack of communication and care that has been shown. I hope that we can kick-start this relationship and give CML patients some reassurances that their questions and concerns are being taken seriously and explored. Given the amount of money that the switch to generics will save the NHS, it is surely the very least that can be done.

With stretched budgets, patient advocates and charities are under increasing pressure to fill gaps. I am proud to represent my fellow patients and I will not stand by and be done unto and I will not go away. We are a ground-breaking bunch of cancer survivors and I expect to be treated with the same amount of dignity and respect by NHS England that we are shown at all other touchpoints within the NHS.

I’m sure you appreciate how important it is for patients to have faith in the system, I look forward to answers in full for all my questions including this addition to my previous letter.

5. Some patients are reporting that consultants aren’t fully briefed on the switch. What measures have been put in place to ensure information has been disseminated and how is the data from new side-effects being monitored and centrally collated? Some patients are reporting new and different side-effects after switching.

The concerns I had in my previous letter still stand; the process that brought generic imatinib to market is flawed and this is now being realised. I hope that you can provide the reassurances that are needed.

Yours sincerely,

Kris Griffin (Mr)
078xxxxxxxx

CC: Secretary of State for Health, The Right Honourable Jeremy Hunt MP
CC: Chief Executive of NHS England, Simon Stevens
CC: MP for Wyre Forest, Mark Garnier
CC: CML-UK Facebook Group
CC: CML-Worldwide Facebook Group
CC: Access CML Drugs blog

 

Letter to Dr Fielden dated 21st December 2016 – PDF
Letter to Dr Fielden dated 16th February 2017 – PDF

 

The Girls – a musical comedy

Yesterday, Kelly (my wife) and I attended a special performance of The Girls at the Phoenix Theatre in London.

The Girls follows on from smash hit play and film Calendar Girls, the true story of a group of Yorkshire housewives who posed nude in order to raise funds to buy a settee for their local hospital, in memory of one of their husbands. To date, they have raised almost £5million for Bloodwise. This musical comedy shows life in their Yorkshire village, how it happened, the effect on husbands, sons and daughters, and how a group of ordinary ladies achieved something extraordinary.

Me with the amazing REAL Calendar Girls (2013)

The show has brought together the writing talents of Gary Barlow and Tim Firth; it originally opened at The Grand Theatre in Leeds and The Lowry Theatre, Salford. Now it’s in the West End until April.

We were kindly invited by the producers of the show and by Bloodwise, along with lots of other patients and many health care professionals. This was the first performance at The Phoenix and as we settled into our seats, we weren’t sure what to expect.

The show was a smash; great songs, as you would expect from Gary Barlow, and a fluid, creative set. All of the performance were strong and the time flew by. The incredibly familiar story was brought to life in a way the film and the previous production didn’t, it was all too easy to fall in love with these characters again. The show ended with a magnificent standing ovation from a packed theatre.

The trouble is that it’s an incredibly difficult watch. 24 hours later and I’m still completely and utterly emotionally drained. The scenarios and situations felt all-too-real and I’m not ashamed to say that I spent the majority of the performance with tears streaking down my face.

The subject of blood cancer and an ultimately tragic illness were dealt with respectfully and with great compassion and as a patient, I didn’t feel patronised at all.

My emotional connection wasn’t helped by the fact that I’ve spent time with the real Calendar Girls. At two Bloodwise Impact Days, I’ve been led astray by the girls and their husbands (the boys?) until the early hours. They are incredible company and the relationships I saw on stage were an uncanny reflection of people I’ve spent time with.

This show deserves to play packed houses for the entire run, it’s a wonderful night out. It’s a show where you’ll find real emotional attachment. The people are real…really, real. And the comedy is real, the laughter is real, the passion is real and the potential life-affirming outcome from a tragic illness are real. It’ll make you want to plant a sunflower and toast ‘Clarky’. Congratulations to all involved.

Huge thanks to Bloodwise (especially Andy), the UK’s specialist blood cancer charity, who hosted patients and really looked after us. Bloodwise will receive monies from the production.

www.thegirlsmusical.com
Bloodwise: The Girls

Speaking at the APPG on Blood Cancer (Westminster, London)

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:

GENERICS.
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.

SUPPORT
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.

GENERAL AWARENESS
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…
PERCEPTIONS
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.

INSURANCE
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

CML Support Group in Birmingham

A quick heads-up for all CML patients in the Midlands. Leukaemia Care are holding their first CML support group at the Novotel Birmingham Hotel on Broad Street.

The event is later this month, on Saturday 28th January, and will run from 1030 until 1300. It’s free to attend and Dr Manos Nikolousis, Consultant Haematologist, will be on hand to answer your questions on CML.

Please let Leukaemia Care know if you are attending so they are able to cater for all.

Download the poster as a PDF HERE.

Video: Taking blood

When I visited the hospital in October 2016 I decided to document my visit for the benefit of other Chronic Myeloid Leukaemia (CML) patients. The video does contain footage of blood being drawn.

I received my results early and my leukaemia continues to be undetectable. I hope that this video helps newly diagnosed patients or patients who have concerns about regular blood tests. Please contact me if you have any comments or questions.

Thanks for watching, Kris

Meeting Jess Phillips MP

Whenever I attend the All Party Parliamentary Group (APPG) meetings in London for cancer I always pine for one on blood cancer, it’s quite a strange thing to pine for but there you have it. You can imagine my delight at writing the last piece of news about the announcement of an APPG for blood cancer.

I’ve been fortunate to meet two of the founding officers in the past: Jim Shannon, DUP MP for Strangford and Henry Smith, Conservative MP for Crawley. Today I was lucky to meet Jess Phillips, Labour MP for Birmingham, Yardley. She’s a relatively new MP, winning her seat in 2015 but she’s already made a huge splash; Google her, go on, it’s worth it.

I can happily inform that she lives up to the hype. She’s positive, incredibly charismatic, passionate and honest – a perfect storm for an MP. She’s a refreshing change and fights for good; sadly, no cape.

She’s passionate about blood cancer patients, her Dad has lived with chronic myeloid leukaemia (CML) since she was 11, there was clearly a calling to the APPG. I loved how we laughed about life, how we discussed equality and fairness and how important it is and how political divides shouldn’t create barriers; how we can make a difference.

I left her office on cloud nine and I’ve just finished writing an email to her outlining our discussion points and some suggested lines of investigation. I have faith and I think we’re in good hands.

Thanks to Bloodwise for supporting the APPG and for all those involved in pushing the agenda for blood cancer patients.

Kris

Jess Phillips MP and Kris Griffin

MPs take action on blood cancers

There has been some great news for blood cancer patients coming from Parliament recently. Firstly, Henry Smith, the MP for Crawley (and someone I met with last year), has set up an All Party Parliamentary Group (APPG) specifically on blood cancer. The group will look into the key issues affecting patients with blood cancers, and is an acknowledgement that MPs understand that haematological cancers are very different to solid tumours – in the impact they have on patients as well as the need for different kinds of information, support and treatments to be available. MPs who will sit on the APPG include Jim Shannon, Colleen Fletcher and Birmingham Yardley MP Jess Phillips Bloodwise will provide the secretariat to the group. I hope to engage with the APPG soon, and will update you as to how I get on.

In addition to this, Jim Shannon and Henry Smith hosted a debate in the House of Commons last week to discuss blood cancers and the Cancer Drugs Fund (CDF). The debate, which took place in Westminster Hall, saw a number of MPs from different political parties discuss issues relating to the diagnosis, management and treatment of different blood cancers. Many of the MPs had had personal experience of blood cancer and spoke about how their families had been affected and the need to improve patient access to vital, life-extending medicines. Improved awareness of the signs and symptoms of blood cancers for GPs was also noted as being crucial to improving diagnosis rates and earlier diagnosis.

Another topic repeatedly raised during the debate was the appraisal methods used by NICE which don’t work for blood cancer medicines, which generally treat very small numbers of patients and don’t fit the usual model by which NICE evaluates the “value” of a drug. The ‘postcode lottery’ which exists in terms of patient access to treatment was also covered, something which I have campaigned extensively on, particularly in the case of Khalid Younis who could only access treatment with ponatinib by moving to Wales as the drug is not approved in England.

The creation of the APPG and the debate are very positive steps towards getting improved recognition of blood cancer. Parliamentarians focussing on the key issues can only be a good thing for patients. Whether or not your local MP is on the list of people who attended the debate or not (below), I would encourage you to write to them to ask them to support the APPG and get involved in campaigning for improvements to the lives of anyone affected by blood cancer.

The MPs who contributed to the debate were:

• Jim Shannon, DUP MP for Strangford
• Henry Smith, Conservative MP for Crawley
• Colleen Fletcher, Labour MP for Coventry North East
• Maggie Throup, Conservative MP for Erewash
• Martyn Day, SNP MP for Linlithgow and East Falkirk
• Nigel Dodds, DUP MP for North Belfast
• Nic Dakin, Labour MP Scunthorpe
• Dianne Abbott, Labour MP for Hackney North; Shadow Health Secretary.
• George Freeman, Life Sciences Minister

Thanks, Kris

Kris Griffin and Henry Smith MP