NICE Centre for Health Technology Evaluation consultation

In November 2017 Cancer52 responded to the NICE Centre for Health Technology Evaluation consultation entitled “Increasing capacity within Technology Appraisals“.

Whilst we of course share the desire for earler and faster appraisal for new medicines our response focused on the seeming drop in levels of patient engagement in the HTA process and in the consultation process itself.   There will we understand be a second round of consultation in January 2018, and a speaker from NICE invited to our All Member Meeting on 24th January 2018 to explain the process.

Cancer52’s full response can be read here.


APPGC Cancer Strategy Inquiry – August 2017

Cancer52 submitted written evidence to the APPGC Cancer Strategy inquiry, as the Cancer Strategy Achieving World-Class Cancer Outcomes: A Strategy for England 2015-2020 nears its half way stage.

You can read our full submission here.


NICE Consultation on improving how patients and the public can help develop NICE guidance and standards

Cancer52 has responded on the above consultation (February 2017) and full response can be found here.

The topic was discussed at the Cancer52 All Member Meeting on 24 January 2017.  As a result of that presentation and follow up Q and As, a small working group of Cancer52 members was formed to answer the broad question – ‘What’s the point?’, with the aim of identifying where patient involvement makes a difference to NICE process or results and how we could better manage the time and energy involved from patient groups and patients against what the likely impact of patient group involvement is likely to be.

The working group has written a briefing entitled NICE and Patient Involvement…What’s the point?

Our particular thanks to the working group who contributed so much to this work and to Cancer52 policy lead Sasha Daly of Teenage Cancer Trust:

Chris West, Bloodwise

David Innes, CLL Support Association

Nic Puntis, GIST Support UK

Zack Pemberton-Whiteley, Leukaemia Care

Karen Friett, The Lymphoedema Support Network

Roger Brown, WMUK


Cancer52 response to consultation on Commissioning Policies: Funding of Treatment outside of Clinical Commissioning Policy or Mandated NICE Guidance

Cancer52 has responded to the above consultation (January 2017).  The full response can be found here.

The consultation covers four areas of commissioning

  • General commissioning policies
  • In-year Service Development Policy
  • Individual Funding Requests Policy
  • Funding for Experimental Treatment and Unproven Treatments Policy

and seeks a ranking on both the clarity of the proposals and then asks for more specific feedback.

Overall we found the proposals to be unclear and believe there are a number of areas where patients with rare and less common cancers would be additionally disadvantaged. This includes where rare and less common cancer treatment procedures and treatments are being withdrawn, and concerns about availability of expertise in decision making where there may be less data available.

Said Kate Morgan, member of the policy group for  Cancer52 and lead on this consultation, “We have a number of concerns across these four very complex and diverse areas, especially with the extra challenges of ensuring that there aren’t additional difficulties to be faced by people with a rare or less common cancer.   Specifically we have deep concerns around the transparency of the process around the Individual Funding Requests (IFR) as Cancer52 members have seen a wide-range of subjective and unclear decisions being made on IFRs, particularly relating to any rationale for turning them down. We also question the appropriateness of an IFR panel basing a decision on what might be an arbitrary figure based on an assessment of cost-effectiveness that may not be robust.”



Cancer52 response to NATIONAL INSTITUTE FOR HEALTH AND CARE EXCELLENCE and NHS ENGLAND consultation on proposals for changes to the arrangements for evaluating and funding drugs and other health technologies appraised through NICE’s Technology Appraisal and Highly Specialised Technologies programmes

Cancer52 has responded to the above consultation (January 2017).  The full response can be found here.

In summary Cancer52 disagreed with the majority of the proposals put forward by the consultation. In particular we object to the discretionary element attached to the operation of the proposed budget impact threshold, the lack of any rationale for the threshold value selected (and proposed new QALY values) and the reinterpretation of the legislation supporting the funding requirement.

Said Dave Ryner, member of the policy group for  Cancer52 and lead on this consultation  “We do not believe the objectives set out in the consultation, that patient access to drugs will be accelerated by reforms that will simplify and clarify processes, will be realised.

We believe the reality will be that some groups of patients will endure delayed access to drugs that NICE has recommended are clinically and cost effective for them where any decision making will be entirely at the discretion of NHSE.”

Our key concerns are that the decision making process will lack a developed evidence base to support it and the absence of a challenge or appeal function; both of which will undermine the current process.

Overall we feel that the proposals maintain, rather than diminish, the disadvantages patients with rare and less common cancers face within the current evaluation environment.

We had hoped for a set of proposals that would move towards securing a pricing environment based on performance and outcomes. We are disappointed no mention is made of this laudable objective just as there is no mention of the existing price regulation scheme which caps the budget for drugs in the NHS.

We believe that the upgrading of existing control mechanisms like the scheme  together with a commitment by NHSE to ensure disinvestment occurs for treatments NICE has found to be either ineffective or able to be replaced by new, more effective treatments is sufficient to deliver a sustainable environment for the introduction of new technologies into routine use in the NHS in England.



Cancer52 responds to proposed changes to the Standard Operating Procedures: Cancer Drugs Fund 2015-16 – 15 June 2015

On 15 June 2015, Cancer52 responded to the proposed changes to the Standard Operating Procedures: Cancer Drugs Fund 2015-16.

In summary:

– we are concerned that the new text in the SOP appears to dilute the potential influence of clinicians outside of the National CDF (NCDF) panel in decision making.

– we are concerned that there will be greater uncertainty for patients as a result of drugs being on the approved list at one time, then off the list at another.

– we believe that the new SOP should now be worked up alongside the Accelerated Access Review (AAR)

– we believe that actual use of drugs rather than the proposed ‘potential use’ should be the focus for decision making for NHS England (NHSE)

– we welcome the proposals for a single process for challenging decisions of the NCDF panel and that decisions can now also be challenged by patient groups

Read a one pager summary of our submission as well as the full response.



Cancer52 responds to NHS Consultation on Investing in Specialised Services – 23 April 2015

On 23 April 2015, Cancer52 responded to the NHS public consultation on Investing in Specialised Services.

In summary Cancer52 believes that there is a lack of clarity and lack of clear measurement of key factors that will drive decisions to invest.

We also believe that NHS England

– needs to become more transparent and open and supported by the broader policy framework and funding for the NHS

– must add in appeal to their processes

– must be aligned to ongoing work

– must move beyond engagement to involvement

– should plan for a review of their approach to investing in specialised services in 2 years

– must also declare interests in future consultations

Read a one pager summary of our submission as well as the full response.



Cancer52 responds to NICE consultation on Review Guide to the Methods of Technology Appraisals Addendum – 19 June  2014

Cancer52 has commented on a number of aspects of the Methods of Technology Appraisals  consultation, and submitted its response to NICE.

The full consultation response can be accessed here but in summary we believe that

– there is an opportunity to more fully reflect the impact of disease and the potential benefits of treatment through the additional modifiers of Burden of Illness and Wider Societal Benefit

– patients, and their carers, with their real world experience, are best placed to articulate these impacts and that we should be given the opportunity (and support) to provide evidence on these to the Appraisal Committee both as patient and carer experts and as representatives of organisations for patients and carers

– there should be a full and open approach to evaluation of these changes

Earlier Cancer52 asks to NICE are given here and covers the three key interrelated areas of process, methods and implementation.



Cancer52 responds to NICE consultation on Technology Appraisals Process Guide – 28 March 2014

On the basis of the increasing experience of our members with NICE Technology Appraisals Cancer52 has commented in detail on a number of aspects of the Technology Appraisals Process Guide consultation, but identified three key interrelated issues that it believes important for NICE to truly meet their aspiration of  ‘Putting patients and the public at the heart of NICE’s work’.

David Ryner, Head of Policy for Cancer52, said of the response, “Technology Appraisal processes are complex; participation and engagement represents real challenges for smaller patient groups, such as many  Cancer 52 member groups. That’s why our response presses NICE to make improvements to the assistance it offers to potential patient group and patient participants. ”

Cancer52’s summary of asks to NICE is given here and covers the three key interrelated areas of process, methods and implementation. The full Cancer52 response accessed here.

NICE announced on 26th March 2014 the opening of the consultation on Value Based Assessment.  Cancer52 will be preparing a response to this consultation which runs until 19th June 2014.  If you’re a Cancer52 member and would like to contribute to the Cancer52 response please let us know as soon as possible, and no later than 17th April 2014.