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

Update: MPs debate availability of cancer medicines

Following my previous blog post about Tuesday’s Westminster Hall Debate on the availability of cancer medicines, here’s an update on what happened.

A number of MPs from different political parties participated in the debate, sought by Jim Shannon, an MP committed to improving patient access to cancer drugs. This included two MPs I am scheduled to meet with on my next Westminster day in November, Mark Durkan and Nic Dakin, so it’s great to see they already have a good grasp of the issues we face.

Other MPs contributing to the debate included:

• Philip Hollobone, Conservative MP for Kettering
• Margaret Ritchie, SDLP MP for South Down
• Lady Hermon, Independent MP for North Down
• David Simpson, DUP MP for Upper Bann
• Gavin Robinson, DUP MP for Belfast East
• Sir Oliver Heald QC MP, Conservative MP for North East Hertfordshire
• Nick Thomas-Symonds, Labour MP for Torfaen
• Andrew Smith, Labour MP for Oxford East
• Andrew Gwynne, Labour MP for Denton and Reddish
• Marion Fellows, SNP MP for Motherwell and Wishaw
• Mark Tami, Labour MP for Alyn and Deeside

The debate focussed on the general inequity of access to cancer medicines which patients face, and the recent delisting of drugs from the Cancer Drugs Fund (which included a number of drugs for CML). Jim Shannon highlighted the need to develop a long-term, sustainable solution to the issue of the evaluation and funding of cancer medicines, in order to benefit patients.

Life Sciences Minister, George Freeman MP, responded to the debate on behalf on the Government and cited the commitment NHS England has made to implementing the Cancer Taskforce recommendations, which is encouraging. His view was very much that if NICE has recommended a medicine then NHS England has a duty to fund it, which brings into question drugs which NICE has chosen not to even consider appraising due to small patient numbers – such as ponatinib for CML and ALL. He also mentioned the Government’s Accelerated Access Review (AAR), which was due to report this September, but has now been postponed until 2016. Time will tell if the recommendations of the AAR live up to the Minister’s promises but an accelerated scheme that has consistently been delayed doesn’t fill me with great confidence.

Many readers of this blog sent me messages when we announced this Westminster Hall debate, they had written to their MP telling them about it and asking them to attend. If you did this and the name of your MP isn’t on the attendee list above please write to them again and ask why they didn’t attend; urge them to look into the issues surrounding the delisting of drugs from the Cancer Drugs Fund. I’d be happy to speak to them on your behalf or perhaps we can meet them together. It’s vitally important that as a small community we have a voice and are listened to.

Thanks, Kris

28/10/15 – ADDITION – you can watch a recording of the debate on Parliament Live TV here: http://parliamentlive.tv/event/index/6c473be6-564a-43d2-92e8-65aa6cec067d?in=09:30:00

MPs to debate the availability of cancer drugs in Parliament

I am pleased to announce that next Tuesday, 20th October, MPs will take part in a Westminster Hall Debate on the availability of cancer drugs. This has been sought by DUP MP Jim Shannon, a big advocate of cancer patients, following his attendance at a dinner to discuss access to medicines for blood and rarer cancers earlier in the year. The debate will give MPs the opportunity to discuss the significant problems many cancer patients in England are currently facing in terms of gaining access to the medicines they need.

You will have read about the fight I have taken up to help 43 year old Birmingham father of four, Khalid Younis, gain access to ponatinib for his resistant Chronic Myeloid Leukaemia (CML), including the meeting we had last week with his local MP, Roger Godsiff. I have alerted Roger to the fact that this debate is happening and asked if he can raise Khalid’s case with the Minister to see if we can progress the situation further with the Government and NHS England. In addition, an Access CML Drugs briefing has gone out to a number of MPs I’ve met before, or who have an interest in CML, stem cell transplantation or the ending of the Cancer Drugs Fund. The briefing highlights our key issues and the inequity of access English patients currently face compared to those in Scotland and Wales. You can download the briefing below.

Whilst the debate won’t focus solely on CML or blood cancer, I hope Khalid’s story will form part of the discussion and be used to demonstrate the problems which exist with the current evaluation methods used for cancer medicines in England, particularly with the Cancer Drugs Fund (CDF) refusing to appraise any new medicines between now and when the Fund ends in March 2016. I hope the issue of how the National Institute for Health and Care Excellence (NICE) and the CDF work (or don’t!) together will also be discussed; any future system of evaluation for cancer medicines needs to be able to work for cancers with small patient populations and previous drugs have, sadly, fallen down the gap between NICE and the CDF.

I would encourage everyone to contact their local MP and ask them to attend and contribute to the debate. You can find out who your local MP is here. The more MPs that attend, the greater the level of awareness there will be amongst parliamentarians of the issues we face.

I will post again following the debate.

Kris Griffin – founder of Access CML Drugs

ACCESS CML DRUGS – WESTMINSTER HALL DEBATE – BRIEFING

Event: Leukaemia and Lymphoma Research Impact Day 13th April 2013

I’ll be speaking at this free event so please come and say hi if you spot me. Thanks, Kris

“We won’t be satisfied until every patient with blood cancer can live fully the life that they were given; a life where the diagnosis of a blood cancer has no impact.

In the 53 years since we started the journey to beat blood cancer, our mission has never been clearer: we stop people dying from blood cancer; we make patients’ lives better and we stop people getting blood cancer in the first place.

In 2013, thanks to the collaborative efforts of many throughout the world, survival has improved dramatically since research began in blood cancer, but there is still work to be done both in saving more lives and minimising the impact on the quality of life of patients before and after treatment.

Join us in London on 13 April to hear how we are doing, meet some of the amazing people involved and discover why there has never been a better time to make a positive impact on the world.”

Event details

Date: Saturday, 13 April 2013
Time: Starts at 9:00 am

Location:
Tower Hotel
St Katharine’s Way
London
E1W 1LD

http://leukaemialymphomaresearch.org.uk/event/special-events/impact-day-2013

Feel good factor and farewells at the Royal Albert Hall from just £10

The Calendar Girls have raised £3 million for Leukaemia & Lymphoma Research, inspired by the death of a much-loved husband, father and friend John Baker.

Their story has inspired one of the UKs most successful films, the most successful touring play and is likely to beat the world record for amateur dramatic performances too.

This is your only chance to hear the true story of the Calendar Girls, hosted by Alan Titchmarsh with performances and special messages from a host of actors from the film and play and some of the biggest names in the London West End at the Royal Albert Hall on Sunday October 7 at 6pm.

These already include Ricardo Afonso, John Alderton ,Edward Baruwa, Lynda Bellingham, Cantabile – The London Quartet, Janie Dee , DMJ, Tiffany Graves ,Jan Harvey ,Patricia Hodge, Sue Holderness, Celia Imrie, Lesley Joseph, Debbie Kurup, Peter Skellern, Richard Stilgoe, Stephen Tompkinson and Tabitha Webb. Beth Neilsen Chapman and Patrick Doyle will perform their iconic “I Find Your Love” from the film soundtrack and Tim Firth will perform a specially written tribute with Willy Russell – there will be many more surprises on the night!

This unique show, devised and directed by Hugh Wooldridge of The Night of 1,000 Voices will also feature popular classics and songs from favourite shows such as Rent and Carousel, ending in true WI and Calendar Girls style with a rousing chorus of Jerusalem- you’ll need tissues at the ready!

There is a 50% discount for friends of Leukaemia & Lymphoma Research, tickets are £10 -£27.50 and are available directly from the Royal Albert Hall Box Office: 02075898212 or online at www.royalalberthall.com quoting code 11206.