Cancer drugs fund - Macmillan Cancer Support

A practical guide to living
with and after cancer

If you haven’t been able
to access a particular
drug that would help
control your cancer,
the Cancer Drugs Fund
could help.
This leaflet looks at:
• why the Cancer Drugs Fund was created
• what happens if a treatment is on the list
of approved drugs
• what happens if a treatment isn’t on the list
of approved drugs
• how funding decisions are made
• how to appeal if your application for funding
is denied
• your feelings about being able to access
a particular treatment.
The Cancer Drugs Fund 2

What is
the Cancer
Drugs
Fund
The Cancer Drugs Fund is a special
fund worth £200 million a year. It was
established in 2010 to help improve
access to cancer drugs for people living
in England. The fund ends in March 2014.
The governments of Scotland, Wales and
Northern Ireland decide separately how
they spend their money on health and do
not have similar schemes.
The fund is for cancer drugs that aren’t
routinely available on the NHS. These
are usually drugs that have been shown
to work for your type or stage of cancer,
but have not been evaluated or
recommended for routine use by the
National Institute for Health and Care
Excellence (NICE). This is the organisation
that sets clinical guidelines.
Since April 2013, there has been a national
list of cancer drugs that are approved
for funding by the Cancer Drugs Fund.
But applications can also be made for
drugs not on this list.
The fund doesn’t replace existing funding
processes and is only available after
all other sources of NHS funding have
been explored.
The Cancer Drugs Fund 3

Am I eligible
for funding
List of
approved
drugs
To begin with, it’s important to talk to your
cancer specialist. You can both decide
which treatment is best for you by openly
discussing all possibilities. This will depend
on a number of things, like the type of
cancer you have, its stage, any other
treatments you’ve had, what the side effects
are likely to be, and any other medical
conditions you have.
You must live in England to apply for
the fund.
If you and your cancer specialist agree that
a particular drug is right for you and it is on
the list of drugs approved for funding from
the Cancer Drugs Fund, your specialist will
be able to apply online. They will usually
receive a response immediately, but it may
take up to two days.
The outcome will still rely on the evidence
provided by your cancer specialist and
details of your individual circumstances.
The list of approved drugs is regularly
updated and the drugs that are funded
may change as new drugs become
available, or if a new drug is made
routinely available on the NHS.
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The Cancer Drugs Fund 5

Drugs not
on the
approved
list
Some cancer drugs aren't on the list of
approved drugs. For these, your cancer
specialist, working with local NHS
managers, will look into all reasonable
sources of NHS funding before applying
to the Cancer Drugs Fund on your behalf.
How are
funding
decisions
made
Your cancer specialist has to apply online to
the NHS England regional team that covers
the area where you are to receive or are
receiving treatment (see page 9).
A panel of medical experts will review
individual requests for drugs that aren't
on the approved list.
The panels make funding decisions
based on:
• the evidence provided by
your cancer specialist
• your individual circumstances
(for example, whether the drug may
improve your quality of life or increase
your chance of surviving your illness)
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• any evidence about how well the drug
works and the possible side effects
• the cost of the drug.
They may consider applications where there
is limited evidence.
How quickly
are decisions
made
When the panel reviews an application for
a drug not on the approved list, they should
make their decision within 10 working days.
Panels should give a clear reason for
denying funding for a drug.
Our fact sheet What you can do if a
treatment isn’t available has more
information about how drugs are made
available in the UK, and about other
sources of funding.
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Can I
appeal
against the
decision if
funding is
denied
Your cancer specialist can request a review
of the panel’s decision through the regional
medical director. But they can only do this if
they think:
• the panel didn’t make their decision
using the proper process
• the panel didn’t take into account
all of the relevant evidence
and funding available.
The review panel should make its decision
within five days.
Your cancer specialist can reapply to the
Cancer Drugs Fund if:
• there is a change in your condition
that means you’d get more
benefit from the drug, or
• new research is published that
suggests you would get more benefit.
If you have a general complaint about
your treatment, visit our website at
macmillan.org.uk/makingacomplaint
We have a booklet called Making
treatment decisions, which you may
find helpful.
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How is
the fund
managed
NHS England has overall responsibility
for managing the fund, with four
regional teams carrying out day-to-day
administration using national operating
procedures.
These are:
• North of England
• Midlands and East
• South of England
• London.
Contact details can be found at
www.england.nhs.uk/ourwork/pe/cdf
If you already receive funding for a drug
that was arranged under the old system of
Strategic Health Authorities, this change
in how the fund is managed will not affect
your existing funding for your medication.
The Cancer Drugs Fund 9

Your
feelings
It can be very difficult when a drug that
you and your cancer specialist feel could
benefit you isn’t readily available.
You may feel angry, frustrated and let
down. Dealing with this as well as your
cancer can feel overwhelming.
Having cancer can cause many different
emotions, including anxiety and fear.
These are normal reactions and are part
of the process many people go through in
trying to come to terms with their cancer.
Everybody has their own way of coping
with difficult situations. Some people find
it helpful to talk to friends or family, while
others prefer to seek help from people
outside their situation. Some people prefer
to keep their feelings to themselves.
There is no right or wrong way to cope,
but help is available if you need it.
Our booklet How are you feeling
The emotional effects of cancer looks at
the emotional impact cancer can have,
and explains where you can get advice
and support.
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The Cancer Drugs Fund 11

Further
information
We have more information about
cancer types, tests, treatments
and living with and after cancer.
We also have details of other helpful
organisations and support groups in
your area. You can contact us using
the following details:
Macmillan Cancer Support
89 Albert Embankment, London SE1 7UQ
General enquiries 020 7840 7840
Questions about cancer Call free on
0808 808 00 00 (Mon–Fri, 9am–8pm)
Alternatively, visit macmillan.org.uk
Hard of hearing Use textphone
0808 808 0121, or Text Relay.
Non-English speaker
Interpreters available.
For further information
about access to treatment,
visit macmillan.org.uk/
accesstotreatment
To order any of our booklets,
visit be.macmillan.org.uk
or call us on 0808 808 00 00.
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Useful
resources
The Cancer Drugs Fund
www.england.nhs.uk/ourwork/pe/cdf
The Patients Association
www.patients-association.org.uk
Advises patients on their rights and
access to health services.
Patient Advice and Liaison
Service (PALS)
www.nhs.uk
Provides information, advice and local
support to help patients, families and
their carers.
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Disclaimer
We make every effort to ensure that the information we provide is accurate and
up-to-date, but it should not be relied upon as a substitute for specialist professional
advice tailored to your situation. So far as is permitted by law, Macmillan does not
accept liability in relation to the use of any information contained in this publication,
or third-party information or websites included or referred to in it. Some photographs
are of models.
Thanks
This leaflet has been written, revised and edited by Macmillan Cancer Support’s Cancer
Information Development team. It has been approved by Dr Tim Iveson, Consultant
Medical Oncologist and Macmillan Chief Medical Editor.
With thanks to: Donna Hakes, Head of Clinical Effectiveness, Specialised Services,
NHS England; Geoff Heyes, Senior Public Affairs Officer, Macmillan Cancer Support;
Heidi Livingstone, Public Involvement Adviser, Public Involvement Programme,
National Institute for Health and Care Excellence; Margaret Stanton, Head of
Medicines Access, Clinical and Cost Effectiveness, Department of Health; and the
people affected by cancer who reviewed this edition.
Sources
Cancer Research UK. Cancer Drugs Fund [Online]. Available from: www.cancerhelp.
org.uk/about-cancer/cancer-questions/cancer-drugs-fund (accessed 21.06.13).
NHS Commissioning Board. Standard Operating Procedures: The Cancer Drugs
Fund 2013-14. 2013. Available from: http://www.england.nhs.uk/wp-content/
uploads/2013/03/cdf-sop.pdf (accessed 21.06.13).
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Notes You can use this page to remind yourself of the
questions you want to ask your healthcare team
and to write down the answers you receive.
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More than one in three of us will get cancer.
For most of us it will be the toughest fight we
ever face. And the feelings of isolation and
loneliness that so many people experience
make it even harder. But you don’t have to
go through it alone. The Macmillan team
is with you every step of the way.
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We are the nurses and therapists helping you
through treatment. The experts on the end of
the phone. The advisers telling you which benefits
you’re entitled to. The volunteers giving you a hand
with the everyday things. The campaigners improving
cancer care. The community there for you online,
any time. The supporters who make it all possible.
Together, we are all Macmillan Cancer Support.
For cancer support every step of the way,
call Macmillan on 0808 808 00 00
(Mon–Fri, 9am–8pm) or visit macmillan.org.uk
Hard of hearing Use textphone
0808 808 0121, or Text Relay.
Non-English speaker Interpreters available.
Braille and large print versions on request.
© Macmillan Cancer Support, August 2013. 2 nd edition.
MAC13305. Macmillan Cancer Support, registered charity
in England and Wales (261017), Scotland (SC039907)
and the Isle of Man (604).
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