Patient Experience Survey

Leave a comment

The 2017 patient survey from Leukaemia CARE is now live and they need your help to improve the experience of blood cancer patients!

In 2016, Leukaemia CARE partnered with Quality Health to develop the 2016 blood cancer patient experience survey. 2,519 patients shared their experience of blood cancer from diagnosis through to living with and beyond cancer.

This survey has helped to provide evidence to the extent of issues faced by blood cancer patients in the UK and inform the work at Leukaemia CARE. The leukaemia-specific findings and subsequent recommendations for improvements were highlighted in the ‘Living with Leukaemia’ report – those relating to diagnosis were used to inform the #SpotLeukaemia campaign for blood cancer awareness month.

This year Leukaemia CARE’s patient survey is running again from September through to Saturday 16th December and I want you to share your blood cancer experience.

The 2017 patient survey aims to:

1. Provide a deeper understanding of the issues faced by blood cancer patients, particularly those diagnosed with rare types of blood cancer.

2. Give a greater picture of regional differences between patient experiences.

3. Understand which patient experience issues are getting worse by comparing results to those from 2016 – this will then prioritise the focus of future campaigns.

With your help, Leukaemia CARE will have a greater understanding of the issues faced by blood cancer patients. This will help direct their future work and bring about changes where they are most needed.

Share your experience. Inform the work. Improve the future experience of blood cancer patients.


If you would like to request a hard-copy of the survey, please call 01905 755977 or email


Professor Tessa Holyoake Memorial

1 Comment

The loss of Professor Holyoake is a massive blow to the CML community and a sad loss to her family. Below, you can find a link to a page of remembrance.

Professor Holyoake was a world-leader on Chronic Myeloid Leukemia (CML) achieving outstanding results in CML. Through her research, she developed methods to purify the cells of leukaemia patients. Her most recent study analysed both CML and normal blood stem cells and the key to the survival of CML stem cells. The team led by Professor Holyoake then developed a drug combination to simultaneously target these critical proteins and kill the CML stem cells.

The page will be collated with comments from CML patients all over the world. Most won’t have known her, but many will have benefitted from her work.

It would be nice to show our appreciation, the tributes and photos will be used in a Memorial Book for her family.

Thank you. Kris

Leukaemia CARE – Spot Leukaemia

Leave a comment

This September for Blood Cancer Awareness Month (BCAM), Leukaemia CARE are working to improve public understanding of leukaemia and raise awareness of the most common symptoms patients experience before they are diagnosed.

In the UK, 38% of leukaemia patients are diagnosed via emergency presentation, compared to a cancer average of 22%. The key focus is driving earlier diagnosis of leukaemia, to improve patient experience and save lives.

Leukaemia Care has developed a campaign called Spot Leukaemia which encourages people to learn about leukaemia and the common symptoms. Leukaemia can be hard to spot because the signs and symptoms are common to other unrelated illnesses. Knowing what to look out for could help you make the decision to visit your GP sooner.

Leukaemia Care has also been contacting GPs to inform them of the campaign, so that they are aware of Spot Leukaemia and the messaging, in case patients ask them about symptoms they are experiencing.

The campaign is designed with one thing in mind: Awareness.

To this end, can you help Leukaemia Care raise awareness for this campaign by reading and sharing the information on this page and signing up for the Thunderclap?


Ponatinib (Iclusig) – GREAT NEWS!!!

Leave a comment

I love news like this, especially when it’s been four-years in the making.

Iclusig (ponatinib) for the treatment of Chronic Myeloid Leukaemia (CML) in adult patients with chronic phase, accelerated phase, or blast phase CML who are resistant to dasatinib or nilotinib; who are intolerant to dasatinib or nilotinib and for whom subsequent treatment with imatinib is not clinically appropriate; or who have the T315I mutation.

For CML patient in England, this means we now have another safety net that is readily available for consultants to prescribe immediately. This is going to make a big difference to treatment options and the mental well-being of many patients.

Just a quick shout to all of the people who work for and are associated with Incyte (formally ARIAD) who’ve never given up on this and have worked so hard to get it to us. Congratulations and thank you.

NICE has also recommended ponatinib for treating Philadelphia-chromosome-positive acute lymphoblastic leukaemia in adults. Hit the link for more info on this:

The full press release follows.



NICE Issues Positive Final Recommendation for Iclusig (ponatinib) for Chronic Myeloid Leukaemia (CML) in England

CML patients across the UK who are resistant or intolerant to second generation tyrosine kinase inhibitor (TKI) therapies will now have equal access to Iclusig

LONDON, UK [28 April 2017] – Incyte Corporation (Nasdaq:INCY) announces that the National Institute for Health and Care Excellence (NICE) Technology Appraisal Committee (TAC) has published a positive Final Appraisal Determination (FAD) recommending Iclusigâ (ponatinib) for the treatment of Chronic Myeloid Leukaemia (CML) in adult patients with chronic phase, accelerated phase, or blast phase CML who are resistant to dasatinib or nilotinib; who are intolerant to dasatinib or nilotinib and for whom subsequent treatment with imatinib is not clinically appropriate; or who have the T315I mutation.[i]

The positive FAD from NICE brings CML patients in England in line with those in Wales and Scotland who have had full-access to Iclusig, according to its license,[ii],[iii] since 2015; providing patients with CML across the UK who have failed other treatments equal access to an additional and important option.

Today’s decision is important for patients with CML who have failed other treatments, as well as for physicians in England, who will now have access to the clinical benefits of Iclusig,” commented Mark Tanner, General Manager of Incyte Bioscience UK. “Together with the CML community, we have worked very hard over the last four years to encourage NICE to reconsider their original evaluation and are delighted that NICE has acknowledged the unmet need and the value that Iclusig brings.”

CML is a rare blood cancer with around 700 new cases each year in the UK.[iv]  CML affects economically active people, with around 50 percent of UK cases in people aged under 65 years.iv Many patients with a new diagnosis of CML have a prolonged clinical benefit from targeted therapy with tyrosine kinase inhibitors (TKIs). However, there has been a high unmet need and poor prognosis for patients whose advanced disease is resistant and intolerant to other therapies.[v] Once available treatment options are exhausted, the prognosis can be poor.v  Despite advances in treatment, there remains a need for additional effective therapies for the management of CML.[vi] Iclusig fulfils an important need in the treatment pathway for CML patients and provides clinicians and patients with a full suite of treatment options for CML.

Professor Jane Apperley, Department of Haematology, Imperial College School of Medicine, Hammersmith Hospital, London said, “This is an exciting and long-awaited outcome, which allows physicians to manage patients in a logical and clinical-evidence based manner with the goals of improving long-term survival and providing a good quality of life.”

Iclusig was approved by the European Commission[vii] in 2013 as an orphan drug for the treatment of adults with chronic phase, accelerated phase, or blast phase CML who are resistant to dasatinib or nilotinib; who are intolerant to dasatinib or nilotinib and for whom subsequent treatment with imatinib is not clinically appropriate. In Ph+ALL (Philadelphia chromosome‒positive Acute Lymphoblastic Leukaemia) patients, Iclusig is licensed for adult patients with Ph+ ALL who are resistant to dasatinib; who are intolerant to dasatinib and for whom subsequent treatment with imatinib is not clinically appropriate. Iclusig is also licensed for people with CML and PH+ALL who have T315I mutation.[viii]

About CML and Ph+ ALL

CML is a cancer of the white blood cells that is diagnosed in approximately 7,000 patients each year in Europe.[ix] CML is characterized by an excessive and unregulated production of white blood cells by the bone marrow due to a genetic abnormality that produces the BCR-ABL protein. After a chronic phase of production of too many white blood cells, CML typically evolves to the more aggressive phases referred to as accelerated phase and blast crisis. Ph+ ALL is a subtype of acute lymphoblastic leukaemia that carries the Ph+ chromosome that produces BCR-ABL. It has a more aggressive course than CML and is often treated with a combination of chemotherapy and tyrosine kinase inhibitors. The BCR-ABL protein is expressed in both of these diseases.

About Iclusig® (ponatinib) tablets

Iclusig targets not only native BCR-ABL but also its isoforms that carry mutations that confer resistance to treatment, including the T315I mutation, which has been associated with resistance to other approved TKIs.

In the EU, Iclusig is approved for the treatment of adult patients with chronic phase, accelerated phase or blast phase chronic myeloid leukemia (CML) who are resistant to dasatinib or nilotinib; who are intolerant to dasatinib or nilotinib and for whom subsequent treatment with imatinib is not clinically appropriate; or who have the T315I mutation, or the treatment of adult patients with Philadelphia-chromosome positive acute lymphoblastic leukemia (Ph+ ALL) who are resistant to dasatinib; who are intolerant to dasatinib and for whom subsequent treatment with imatinib is not clinically appropriate; or who have the T315I mutation.

Incyte has an exclusive license from ARIAD Pharmaceuticals, Inc, a wholly owned subsidiary of Takeda Pharmaceutical Company Limited, to develop and commercialize Iclusig in the European Union and 28 other countries, including Switzerland, Norway, Turkey, Israel and Russia.

About Incyte

Incyte Corporation is a U.S.-based biopharmaceutical company focused on the discovery, development and commercialization of proprietary therapeutics. For additional information on Incyte, please visit the Company’s website at

Follow @Incyte on Twitter at

[i] NICE. 2017. Final Appraisal Determination: Ponatinib for treating chronic myeloid leukaemia and acute lymphoblastic leukaemia. Available at Last accessed 28 April 2017

[ii] All Wales Medicines Strategy Group. Ponatinib (Iclusig). Appraisals. Available at: Last accessed 24 March 2017

[iii] Scottish Medicines Consortium. SMC Advice. Ponatinib (Iclusig). Available at: Last accessed April 2017.

[iv] CRUK. Chronic myeloid leukaemia (CML) incidence statistics. Available at: Last accessed April 2017.

[v] Cortes JE, KimD-W, Pinilla-Ibarz J, et al. A Phase 2 Trial of Ponatinib in Philadelphia Chromosome–Positive Leukemias. N Engl J Med 2013;369: 1783-1796. Available at:

[vi] Woessner DW, Lim CS, Deininger MW. Development of an Effective Therapy for CML. Cancer J 2011;17(6):doi:10.1097/PPO.0b013e318237e5b7. Available at: Last accessed April 2017.

[vii] EMA. Iclusig EPAR summary for the public.  Available at: Last accessed April 2017.

[viii] Iclusig Summary of Product Characteristics. Available at: Last accessed April 2017.

[ix] Rohrbacher M, Hasford J. Epidemiology of chronic myeloid leukaemia (CML). Best Pract Res Clin Haematol. 2009 Sep;22(3):295-302. Based on current estimate of population of Europe (738,199,000 in 2010).


Leukaemia Care: I wasn’t born yesterday

Leave a comment

Leukaemia Care has published this outstanding report, it’s well worth a read. As a trustee of Leukaemia Care and a CML patient, I’m incredibly proud of the hard work that has gone into publishing this. Thank you. Kris
What’s the problem?
Research from sources such as Macmillan and Public Health England has shown that cancer survival worsens with increasing age. Older patients (those aged 65 and over) make up just under two-thirds of all leukaemia cases (64%). However, this group accounts for 81% of all leukaemia related deaths. The new report ‘Leukaemia: I wasn’t born yesterday’ looks at the challenges faced by older patients and makes recommendations for improvements.

What this means for patients
As part of our report, we undertook a survey of over 1,300 leukaemia patients, to uncover the inequalities that are impacting on cancer survival and patient experience.

Based on what you told us, we have made the following recommendations:
1. Improved awareness of the signs and symptoms of leukaemia, amongst the public and healthcare professionals, including the link between leukaemia and age.
2. Access to a clinical nurse specialist from diagnosis onwards for all patients.
3. Tailored information and support for patients, based on their individual need, not age. This should include guidance on finding accurate information online.
4. Equal access to clinical trials for patients of all ages, to ensure that robust evidence is available on the most appropriate treatment

What can you do to help?
1. Download a copy of the report (PDF)
2. Share the report on social media to help spread the word
3. If you’re aged 65 and over and have been affected by leukaemia, get in touch with us to share your story by emailing or calling 01905 755977
4. Keep up to date with our campaigns by signing up to receive email communications from LC.


All-Party Parliamentary Group on Blood Cancer Launches Inquiry

Leave a comment

You may remember that I spoke at the inaugural All-Party Parliamentary Group (APPG) on Blood Cancer earlier in the year. I’m delighted to say that the first inquiry undertaken by the APPG, will look at all aspects of blood cancer, including awareness, diagnosis, patient experience, commissioning of services and clinical research.

The inquiry has a wide remit and will be summarising findings and recommendations in a report to be published later this year.

This report will provide an important overview of the blood cancer landscape and will raise a range of issues which the APPG will explore in more detail in the months and years ahead.

As part of this inquiry, the APPG will be holding oral evidence sessions and inviting written evidence from stakeholders including patients and carers. Submissions can be made via an online form, by email or through the post by 27th April.

Henry Smith MP, Chair of the All-Party Parliamentary Group on Blood Cancer said: “Blood cancer is the third biggest cancer killer in the UK, and the fifth most common cancer overall, yet awareness among the general public and policy audiences is still low. We need to make sure that NHS provision meets the needs of all cancer patients, especially in areas such as blood cancer where the patient journey differs from the majority of solid tumour cancers.

We have a deliberately wide remit for this inquiry, the first of the APPG on Blood Cancer – this inquiry and subsequent report will provide a valuable overview of the blood cancer landscape, and I’m sure it will raise several issues that the APPG will want to explore in more detail in future inquiries.

PLEASE engage with this process, I hope that the APPG will provide an incredibly powerful force in ensuring blood cancer patients are not forgotten about or left behind. It is imperative that patients support the process and the people behind it.

Please click here for more information on the group, or follow them on Twitter: @APPGBloodCancer.

Thanks, Kris

Henry Smith MP, Chair of the All-Party Parliamentary Group on Blood Cancer

Henry Smith MP, Chair of the All-Party Parliamentary Group on Blood Cancer

(Another) open letter to Dr Fielden: generic imatinib

Leave a comment

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

17th 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 16th 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 21st 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.

  1. 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)

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


Older Entries