Memorandum submitted by Breast Cancer
Care (CP 16)
1. SUMMARY OF
RECOMMENDATIONS
1.1 Breast Cancer Care believes that all
cancer patients should be exempt from prescription charges. We
feel it is unreasonable that they should have to pay for life
saving drugs or for drugs to combat the debilitating side effects
of their cancer treatment. This includes hormonal therapies that
are prescribed to breast cancer patients for several years after
their initial treatment.
1.2 Breast Cancer Care would like to see
hormonal therapies prescribed for longer periods, to cut down
the cost and inconvenience of frequent prescriptions for a long
term medication. We would also like to see uniformity across the
country to ensure all breast cancer patients are receiving prescriptions
of the same length.
1.3 Breast Cancer Care would like to see
more being done to ensure all cancer patients are informed of
the Prescription Pre-Payment Certificate (PPC). Many breast cancer
patients find the PPC invaluable in helping them cover the cost
of their prescriptions but a concerning number of those we spoke
to do not use the PPC despite the fact that it could benefit them
financially.
2. INTRODUCTION
2.1 Breast Cancer Care
2.1.1 Breast Cancer Care is the UK's leading
provider of information, practical assistance and emotional support
for anyone affected by breast cancer. Every year we give direct
support to over 22,000 people with breast cancer or breast health
concerns through our helpline, peer support and other direct services.
In addition, we respond to two million requests for support and
information about breast cancer or breast health concerns through
our publications, website and outreach work. All our services
are free. We are committed to campaigning for better treatment
and support for people with breast cancer and their families.
2.2 About this response
2.2.1 A diagnosis of breast cancer often
has many long term financial implications attached to it. A major
issue we frequently hear about from people affected by breast
cancer is prescription charges. Over the past months we have been
gathering views and experiences related to prescription charges
from people across England who have been diagnosed with breast
cancer. In total, 115 women completed the survey. We have used
our findings to develop and illustrate this response which is
mainly focused on the issue of prescription charges. Key findings
from the survey:
— 98% of respondents think cancer patients
should be exempt from paying prescription charges
— 38% of respondents think prescription
charges should be completely abolished
— 43% of respondents have experienced
financial difficulties as a result of paying prescription charges
— 39% of respondents use a Prescription
Pre-Payment Certificate
— 15% of respondents have decided not
to get their prescription dispensed because of the cost
3. Are charges equitable and appropriate?
3.1 Breast cancer is a potentially life
threatening condition and it seems inequitable to breast cancer
patients that they have to pay for their prescriptions when people
diagnosed with other conditions are exempt. Respondents to our
survey feel they are being discriminated against, even though
they have developed breast cancer through no fault of their own.
"Most life threatening conditions such as
diabetes and thyroid problems are exempt from prescription charges
so I think by not exempting breast cancer we are discriminated
against. How can the authorities say one condition is more serious
than another?" Sarah Clark, Kent
"We have a life threatening, long term condition.
In this respect cancer patients are no different from those with
diabetes or thyroid conditions. Why are we discriminated against?"
Jackie Igoe, Wirral
"Psychologically you feel that you are being
punished for getting cancer." Tracey Harrison, Cheshire
3.2 Some breast cancer patients feel the
very principle of having to pay for prescriptions for life-saving
drugs is unjust. One reason given is that people who develop a
life threatening illness such as breast cancer, who have worked
and therefore paid their National Insurance contributions for
many years, have a right to receive their healthcare for free,
including prescriptions. Others state economic reasons, in that
they believe it would be cheaper to cover the cost of prescription
charges for cancer patients, and thereby ensure all patients are
able to take the drugs they need and maximise the chances of recovery,
than it is to pay for the care of terminally ill secondary cancer
patients.
"I have always been a firm believer in a
National Health Service funded from general taxation and free
at the point of need. I see this principle being increasingly
eroded, not least by the ever-rising cost of prescriptions."
Breast cancer patient, Oxfordshire
"Reducing the numbers of people who go on
to develop secondary cancers reduces the overall cost to the NHS.
The longer a person remains healthy the less the cost to the NHS
in the longer term." Jacqueline Tipple, Kent
3.3 Breast cancer patients feel that having
to pay prescription charges exacerbates an incredibly stressful
situation. They are already having to cope with the inevitable
concerns and emotions a diagnosis of breast cancer brings and
feel they should not have to add finances to their list of worries.
People may have to find money for a whole range of co-payments
and other expenses, including hospital parking fees, travel and
childcare, at a time when they may be on a reduced income as they
are unable to work due to their illness and treatment. We have
particular concerns about people affected by secondary breast
cancer, as they will often require significantly more drug treatments
than others and will therefore be under more of a financial burden
from prescription charges.
"Dealing with a terminal disease is difficult
enough without worrying about the cost of life-saving prescriptions."
Pat Montgomery, Leicestershire
"Many like myself are unable to work and
are only receiving SSP from their employer and simply cannot afford
to pay these charges along with other costs of getting to hospital,
car parking etc." Breast cancer patient, Staffordshire
"The diagnosis brings lots of financial
pressures in addition to prescriptions: travel for treatment,
car parking, heating, clothing, wigs, food. Why should you have
to pay for being ill?" Barbara Thomas, Norfolk
"There are many additional expenses that
you incur once you have been diagnosed with cancer such a vitamins
and supplements to improve your immune system. Additional purchases
when going through chemotherapy. Extra petrol, car parking due
to many attendances at hospital. It's certainly not cheap being
ill." Janet Clegg, Lancashire
3.4 43% of respondents to our survey reported
that the cost of prescription charges impacts on other areas of
their finances or causes them financial difficulty. This is of
great concern, because, as was stated earlier, a diagnosis of
breast cancer is extremely stressful without the added difficulty
of financial pressures. This also shows that the financial support
provided by the current exemptions system does not extend far
enough, as in theory, all those who are not eligible for exemptions
should be able to afford their charges. This is clearly not the
case for the 15% of respondents who have decided not to get their
prescriptions dispensed because of the cost.
"I have a family of five and therefore have
to pay for a lot of outgoings. We're not all made of money and
extra money spent on prescriptions means less money spent on my
children's education or we have to reduce our food budget."
Secondary breast cancer patient, Berkshire
"I had to cut my family's food budget down
to afford the prescription charges which made me feel guilty on
top of being ill." Patra Aretakis, Cambridgeshire
"My heating bills went up as did my petrol
bill because of travel to hospital. I am still paying off the
debt on my credit card for from money I spent on these extras.
I feel I should not have paid for my prescriptions." Christine
Clover, Lancashire
"Sometimes when I didn't have much money
I spent it on food instead of prescription charges." Breast
cancer patient, West Yorkshire
3.5 Some breast cancer patients feel they
should be able to access free dental treatment while they are
being treated for breast cancer, as a common side effect of chemotherapy
is a sore mouth and gums, infected mouth sores and the exacerbation
of any existing dental problems. As these problems are directly
related to chemotherapy, they should be free of charge for the
duration of the treatment.
3.6 Paying for wigs is another expense that
breast cancer patients feel strongly about. Many breast cancer
patients lose their hair as a result of chemotherapy and while
inpatients are entitled to a free wig, outpatients have to pay
a prescription charge of £53.10 for a basic NHS wig. Breast
cancer patients do not think this is equitable. Hair loss can
be one of the most distressing side effects of chemotherapy and
can deeply affect a patient's self-esteem, body image and sense
of dignity, regardless of whether they are an inpatient or an
outpatient. Patients who have to pay for their wig feel they are
being penalised financially. This could become a more prevalent
issue as new methods of treatment, such as oral chemotherapy drugs,
allow growing numbers of people to receive treatment as outpatients.
"I would have had a free wig had I received
my chemo as an inpatient. This didn't make much sense to me. If
I'd been sick enough to be in hospital a wig would have been the
last thing on my mind. However it was an expense I had to make
as my confidence had sunk so low I couldn't have gone without
a wig." Breast cancer patient, Lincolnshire
3.7 The main prescription charge encountered
by breast cancer patients is for hormonal treatments such as tamoxifen
and Arimidex. Breast cancer patients feel it is extremely unfair
they should have to pay for a drug that is vital in preventing
the recurrence or spread of breast cancer. Hormonal therapy is
just as important to a breast cancer patient's recovery as inpatient
treatments such as radiotherapy and chemotherapy, yet it has to
be paid for simply because it is taken at home rather than in
hospital.
"You are prescribed with a life saving drug
by your clinician, as part of your treatment after surgery, chemotherapy
and radiotherapy. As this is part of the means by which your cancer
is hopefully kept under control, you should not have to pay prescription
charges at all for such drugs." Breast cancer patient, Surrey
3.8 The long term nature of hormonal treatment
means breast cancer patients can have to find the money to pay
for their prescriptions, both for their hormonal treatment and
for drugs to combat any side effects, for up to five years, which
can be an ongoing pressure on their finances. In the future this
could increase to as much as 10 years, with the introduction of
new aromatase inhibitors (one type of hormonal therapy). Another
issue that breast cancer patients feel strongly about is how often
they receive their prescriptions. There are discrepancies across
the country, with some women being prescribed their hormonal therapy
for three months at a time, others for two months and others for
just one month. Some respondents told us that they had asked to
receive more than one month's supply of their treatment on each
prescription but were told it was not possible. This variation
in prescribing habits is penalising those breast cancer patients
who have to pay for a prescription every month. There does not
seem to be any uniformity as to how often prescriptions for hormonal
therapies are issued and naturally some women feel they are being
unfairly treated.
"If hormone treatments are not to be exempt
they should be given once a year so that we only have one prescription
charge per year." Sarah Clark, Kent
"I can't understand why prescriptions cannot
be given for a longer time span which would save time and cost
all round." Caroline Way, Norfolk
4. Exemptions
4.1 Breast cancer patients feel that any
condition that is either life threatening or long term, or both,
should be exempt from prescription charges and other co-payments.
This includes all types of cancer. One of the reasons given by
respondents to our survey as to why cancer should be added to
the list of conditions that are exempt from prescription charges
is the changing nature and length of treatment. Survival rates
are increasing and people can now receive long term treatment
for their condition, for both primary and secondary cancers. As
stated earlier, hormonal treatments for breast cancer are routinely
taken for five years, which could rise to ten with the introduction
of new aromatase inhibitors, and new developments, such as oral
chemotherapy, are reducing the amount of time that patients have
to spend in hospital. This also means that patients are liable
for more prescription charges than ever before. The current system
of charges needs to be updated to take this into account—as
it stands it is out dated and full of anomalies.
"Many years ago a cancer diagnosis was as
good as a death sentence so I can imagine that policy makers did
not consider it a `lifelong' illness. Now treatment has improved
greatly and the diagnosis is not always a death sentence but can
be managed by medication. . . . There could be a new drug on the
market and I could be prescribed that therefore I could live for
decades thanks to medication. Cancer treatment has become more
and more long term and I therefore believe long term medications
should be free." Helen Eastham, Lancashire
5. Awareness of eligibility for exemption
5.1 Despite the fact that most people diagnosed
with breast cancer will take a hormonal treatment, along with
drugs to combat any side effects, for several years after inpatient
treatment and that many are only prescribed one month's supply
per prescription, only 39% of respondents to our survey use a
Prescription Pre-Payment Certificate (PPC). This is a surprisingly
low number and suggests that breast cancer patients are not routinely
being made aware of the PPC. This is worrying, as those who do
use a PPC are overwhelmingly positive about its financial benefit
and it could no doubt assist many others who report financial
hardship as a result of co-payments and charges. We believe more
should be done to ensure that all cancer patients are informed
of the PPC.
"I found out by chance all too late about
pre-payment. I wish the hospital had informed me about this."
Patra Aretakis, Cambridgeshire
6. Should charges be abolished?
6.1 Breast Cancer Care believes that cancer
patients should not have to pay co-payments and charges for anything
that relates directly to their cancer treatment, whether as an
inpatient or outpatient. The overwhelming majority of people who
responded to our survey, 98%, believe that cancer patients should
be exempt from paying prescription charges.
6.2 There were mixed opinions from respondents
to our survey over the complete abolition of prescription charges
with the majority, 62%, opposed to the idea. Many of the breast
cancer patients we spoke to are happy to pay prescription charges
for other items, but feel they should be exempt for drugs and
treatments that are related to their cancer.
"I don't mind paying for one off prescriptions
but long term medication should be free." Julie Ulvmoen,
Middlesex
"I feel that if you can afford it you should
normally pay for prescriptions—after all we all go to the
supermarket and stock up with aspirin etc. However after a cancer
diagnosis I feel there should be a waiver—it is scary enough
as it is and the drugs are a necessity." Hilary Duckett,
Wiltshire
Jenny Priest
Breast Cancer Care
December 2005
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