Download on Tuesday 29th January 2013

PATIENT PARTICIPATION
Cancer Care Focus Group at
Caen Medical Centre
on Tuesday 29th January 2013
Attendees
Dr Susanna Hill
Dr Brian Bennett
Nurse Gilroy
Julie Tanton
Mrs Carder
Mrs Mew
Ms Turner
Mrs Melhuish
Ms D Smith
Mrs Whitehorn
Mr Scott
Mr & Mrs Webber
Mr & Mrs Evans
Mrs Robinson
Mrs Saunders
Mr Whitely
Mr Needham
The practice had invited 19 patients who have had a cancer review performed by the
practice since January 2012 to attend today’s focus group meeting. 15 patients accepted
this invitation and 13 patients managed to attend the meeting today, 2 of these also
brought their partners with them.
Welcome/ Introduction
Dr Bennett started the meeting by thanking everyone for taking the time to attend and
asked everyone around the table to introduce themselves. Dr Bennett then explained that
we hold patient focus group meetings on a quarterly basis inviting selected groups of
patients with particular needs or conditions to discuss how we are doing at meeting their
needs, the experiences they have encountered and how we might improve our services by
asking them for feedback.
Dr Hill explained to the group that she also has a role within McMillan services in North
Devon and had been keen to attend this group, even though it was her first focus group
meeting and slightly daunting. She explained that a particular focus for McMillan was on
how we support people who have had a cancer diagnosis and were post initial treatments.
The purpose of today’s meeting was not about how the diagnosis was made but more to
look at how life goes on for the person post diagnosis, and how we in primary care may
support patients in “survivorship”.
The following topics were raised for discussion.
Communication between Primary and Secondary Care
None of the patients present has experienced any failure in communication between
primary and secondary care with regards to their diagnosis or treatment plan. Many
patients have either been offered or asked to be sent a copy of their consultants letter
which is being sent to their GP, many found this beneficial and would then book an
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appointment with their GP if they had any concerns about the content or were unsure of
any of the medical terminology.
All the patients stated that the whole cancer diagnosis experience is a traumatic journey
both emotionally and physically. Waiting for results of tests can be particularly stressful
and can leave the patient in feeling in limbo. They did understand that these things take
time but that these periods of waiting can be very difficult both for the patient and their
family.
Primary Care Contact once primary/initial treatment was complete
Many of the patients had been pleasantly surprised and appreciative of the input from their
GP once they had received their diagnosis, most had either received a phone call, request
to book an appointment or in some cases a home visit was made. Many felt grateful for
the opportunity to speak to their GP and discuss their concerns about treatment plans and
what the future might hold for them.
Those who had also received input from the District Nursing or Hospice teams felt that this
input had been invaluable, and that at times it had helped greatly to see these clinicians at
home, where they felt they had been able to be more open and frank.
Some said they felt aware of the time restraints on them when both visiting their GP or
Consultant but at the same time had so many questions to ask. One patient asked how
long a GP appointment is for. Dr Bennett explained that a routine appointment is for 10
minutes but that at the request of the patient or GP this can be extended.
Follow Up (especially after the 5 year ‘all clear’ period)
One lady explained that she had felt ‘abandoned’ when after 5 years she was told that she
had the ‘all clear’ and that she no longer needed to attend secondary care for reviews. Dr
Hill explained that 2.4 million people are now living with a cancer diagnosis over 5 years,
and that if secondary care was required to continue seeing all these patients for an annual
review this would clog up the whole system.
This was accepted by most present but they still felt strongly that it was important to them
to have regular contact, say annually, to see perhaps a cancer nurse to discuss any
particular concerns they might have or for reassurance. They said it felt like support was
withdrawn once things started to improve with their physical condition but many still felt
the need for psychological input.
Dr Bennett explained Primary care does not have access to specialist cancer care nurses
who might be able to offer annual review. He also said that asymptomatic reviews were
probably not the most cost affective use of this type of service. Dr Hill explained that
statistics show that most reoccurrences of cancer are not picked up on routine review.
Both Drs Hill and Bennett said that all cancer patients should return for review with their
GP initially if they have any worrying symptoms or concerns. It is therefore important that
the patient has a good relationship with their GP.
Cancer Care Reviews in Primary Care
Dr Hill asked if any one present had been aware of attending for a ‘cancer care’ review at
the practice, as this is something we in primary care are required to offer to all patients
with a new cancer diagnosis. Many present said they had been aware of why they had
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been asked to attend and had felt this appointment with their GP had been beneficial.
They felt that this review is in most circumstance most beneficial if performed between 3-6
months post diagnosis as the initial period post diagnosis is very busy attending hospital
appointments and under going treatment.
Lifestyle Advice
Dr Hill then asked if they had been offered lifestyle advice either from primary or
secondary care e.g. diet and exercise advice, as it was thought that a good lifestyle could
help reduce a reoccurrence of cancer. She also asked if any one present had been
offered help with benefits or financial issues. Most said that they had been given lifestyle
advice and a few had received financial advice. Many of the patients present had also
investigated the benefits options available to them personally, but all agreed that more
information would have been welcome.
McMillan ‘Concerns letters’
A copy of the McMillan letter ‘Things you might like to discuss with your nurse or doctor’
was handed out for discussion. Most of the patients present felt that this would be a good
letter to receive before attending to see their GP as it raised very relevant areas of
concern they might wish to discuss.
Information and Signposting
Most patients said they felt they had been given enough information about their condition
and treatment plan. Dr Hill explained that treatment plans are very individual, with over
220 different types of cancer this is essential. The group felt that the general public, are
inclined to write people off when they have a cancer diagnosis and presumed they would
have chemotherapy and lose their hair. Just amongst today’s group it was apparent that
patients with the same condition e.g. breast cancer, might have received different
treatment plans. Also treatment has changed greatly over the past 10 years and Dr Hill
explained that due to research and development in this area treatment of patients over the
next 10years could be very different to what the patients present today have received.
Many of the group had been assigned a cancer care nurse who had helped them in the
early stages of their diagnosis, and these clinicians had been a great source of information
and advice. One lady had been referred for psychological counselling at RD&E whilst
receiving her treatment, many present said that this would have been beneficial to them if
it had been available locally. One patient’s cancer care nurse had offered help and advice
when he had been trying to obtain travel insurance, she had a wealth of information and
had also helped with social and personal issues.
Dr Hill informed the group that McMillan have an Information centre in Bideford that
everyone can access, they offer help and advice and will even help people to complete
claim forms.
The patients present today said that any information available is greatly received and that
they would prefer to know as much as possible to help them make an informed decision
as to what is best for them.
It was suggested that a waiting room display would be useful to both raise awareness with
the general public and to give information to cancer sufferers.
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Repeat Prescribing
None of the patients present had encountered any problems when requesting medication
and any changes required were dealt with efficiently.
Service at Caen in comparison to other medical centres
None of the patients present had personal experience of the cancer care services
available in other areas, so felt unable to compare the service they had received, but felt
the service they received locally was very good.
Outcome/Changes
 Practice to consider sending McMillan letter ‘Things you might like to discuss with
your nurse or doctor’ to patients with their invite to attend for a ‘cancer care’ review.
 Practice to produce waiting room display using McMillan material to raise
awareness and provide information for cancer sufferers.
After further discussion amongst the practice team present at today’s meeting the
following changes were also suggested:
 Practice to expand ‘Cancer Care’ review template to include lifestyle and social
prompts
 Practice to produce information pack which can be given to patients when they
attend for their ‘cancer care’ review.
Summary/ Discussion
All the patients present were thanked for attending and for their input into the meeting.
The patients present said that they appreciated being invited to participate and being
given the opportunity to discuss their condition and needs. They said that it was great to
meet people like themselves as at times they can feel very isolated.
Dr Hill said that the practice team did not want to add pressure to people already under a
great deal of pressure, but we wanted to ensure the role of their GP was fitting into their
care adequately. The patients present said they felt they had received a wonderful
service from all those involved in their area both in primary and secondary care. The
practice team felt the meeting had been positive and would try to put the suggestions
discussed in place.
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