Document 6423961

Quality Standards Advisory Committee 2
Children and young people with cancer – prioritisation meeting
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Minutes of the meeting held on Wednesday 10 July 2013 at the NICE offices in Manchester
Attendees
Standing Quality Standards Advisory Committee (QSAC) members
Michael Rudolf (Chair) (MR), Tessa Lewis (TL), Lindsay Smith (LS), Parul Desai (PD), Ulrike Harrower (UH), Belinda Gibson (BeG), Alison Raw
(AR), Joanne Greenhalgh (JG), Ashok Bohra (AB), Julie Clatworthy (JC), Kay Mackay (KM), Jean Gaffin (JG), Derek Cruikshank (DC), John
Harley (JoH), Richard Langford (RL)
Specialist committee members
Chris Gibbs (CG), Meriel Jenney (MJ), Brenda Gibson (BrG), Rachel Hollis (RH)
NICE staff
Brian Bennett (BB), Daniel Sutcliffe (DS), Andrew Wragg (AW), Shirley Crawshaw (SC), Jenny Harrisson (JeH)
Topic expert advisers
None attended
Apologies
Observers
Michael Bennett (NICE), Asma Khalil (NICE Fellow)
Standing Quality Standards Advisory Committee (QSAC) members
Barry Attwood, Belinda Dooley, David Minto, Gillian Baird, Ruth Liley
Agenda item
Discussions and decisions
1. Welcome,
introductions and
plan for the day
Welcome and introductions
MR welcomed the attendees. The standing Quality Standards Advisory Committee (QSAC) members and
specialist committee members for Children and young people with cancer introduced themselves
Quality Standards Advisory Committee 2 meeting 100713
Actions
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Agenda item
Discussions and decisions
(private session)
MR informed the Committee of the apologies from standing committee members.
Actions
Plan for the day
MR reviewed the agenda for the day.
2. Welcome and
code of conduct for
members of the
public attending the
meeting
(public session)
MR welcomed the public observers and reminded them of the code of conduct that they were required to
follow. It was stressed that they were not able to contribute to the meeting but were there to observe only.
They were also reminded that the Committee is independent and advisory therefore the discussions and
decisions made today may change following final validation by NICE’s guidance executive.
3. Committee
business
(public session)
Declarations of interest
MR asked standing QSAC members to declare any interests that were either in addition to their previously
submitted declaration or specific to the topic(s) under consideration at the meeting today. MR asked the
specialist committee members to declare all interests. The following interests were declared:
Standing committee members
 JG- Attended a meeting for Pfizer but this did not relate to children and young people with cancer
and she received no payment.
Specialist committee members
 BrG - National Lead for Cancer Services.
 CG - Chair of Childhood Cancer Parent Advice and Treasurer of the Society of Parents of Children
with Cancer. Youngest son treated for Osteosarcoma.
 MJ - Trustee for CLIC Sargent and member of the Children’s Cancer and Leukaemia Group.
 RH - Chair of the Royal College of Nursing Forum for Children and Young People
Minutes from the last meeting
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The committee reviewed the minutes of the last meeting held on 12 June and requested that a change
should be made to section 3.3 around the discussion of bandages. MR agreed to liaise with the NICE
team outside of the meeting to agree the exact wording.
4. Topic session –
Children and young
JeH to liaise with MR
regarding change to the
minutes from the last
meeting
The committee then moved on to discuss children and young people with cancer.
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Agenda item
Discussions and decisions
Actions
people with cancer
(public session)
4.1 and 4.2 Topic
overview and
summary of
engagement
responses
BB presented the Topic Overview and a summary of responses received during engagement on the topic.
4.3 Prioritisation of
quality improvement
areas
BB and MR led a discussion in which areas for quality improvement were prioritised.
The QSAC considered the draft areas as outlined in the briefing paper prepared by the NICE team.
The QSAC agreed that the following areas for quality improvement should be progressed for further
consideration by the NICE team for potential inclusion in the draft quality standard:
 Diagnosis
The committee agreed that the key issue is getting an earliest possible diagnosis. It was reported
that many people visited GPs and other health care professionals but symptoms were not
identified therefore leading to a delayed diagnosis. The committee agreed that a statement around
safety netting may be beneficial. The committee also highlighted that there is a guideline being
reviewed on the recognition and management of suspected cancer in children, young people and
adults which could be used to develop this statement. BB to check the status of the guideline and
any possible recommendations that may be used. The committee also referred BB to the
HeadSmart campaign as this includes some useful tools.
 Organisation of care
The committee felt this to be an important area and highlighted a number of areas to be included
which in turn may lead to 1 or 2 statements being developed. Through discussions on this and
other areas the committee agreed to include the following under the role of MDT: access to clinical
trials where appropriate, discussion before surgical procedures where possible, identification of
key workers and referrals to treatment centres for teenagers and young adults.
 Electronic prescribing
The committee highlighted that this is currently used by a small number of organisations. The
committee felt the use of electronic prescribing would prevent re-occuring errors. It was felt this
was especially important for children as they have significant variations in weight compared to
adults which can increase the risk of incorrect doses being calculated and subsequently being
Quality Standards Advisory Committee 2 meeting 100713
BB to prioritise 6 areas:
Diagnosis, Organisation of
care, Electronic
prescribing, Psychological
and social support,
Rehabilitation and
Transition.
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Agenda item
Discussions and decisions
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Actions
administered. It was felt electronic prescribing would also be beneficial for audit purposes. The
committee agreed that a statement should be included based on the recommendation about
funding for electronic prescribing.
Psychological and social support
The committee agreed that prioritising this area would be of great benefit to families and could
prevent further complex issues arising in the future. The key issue is having services and access
to the services for psychological support for those identified as needing such support. The
committee felt these services should include psychologists or other members of psychological
services with expertise in the care of children and young people.
Rehabilitation
The committee highlighted that the key area for improvement is neuro-rehabilitation. The biggest
problem highlighted is in children with CNS malignancy as even years after treatment issues in
learning and dependency can occur. The committee discussed having a more generic statement
around rehabilitation but agreed that not every child needs rehabilitation and CNS malignancy is a
specific issue which would also be easier to measure.
Transition
The committee were informed that there will be a guideline and quality standard developed on
transition from children to adult services. The committee still felt that following treatment children
are not given the correct information to inform them of possible future implications and therefore a
quality statement should be included for this area. Being different from the patient experience QS
the committee agreed to include a statement around an end of treatment summary which
highlights implications for future management. This would allow good communication between
allied professionals and would keep the patient involved and informed.
The QSAC agreed that the following areas should not be progressed for potential inclusion in the draft
quality standard:
 Clinical trials
The committee felt that this area did not need to be prioritised for a separate statement but would
be beneficial to include as a role for the MDT under organisation of care.
 Care environment
The committee agreed not to prioritise this area as although they felt it important they agreed that
there are already initiatives that cover this. They highlighted that more focus should be on
treatment centres but agreed that this would be covered under organisation of care.
 Surgical procedures
The committee agreed that minimum volume activity levels are already in place for many cancers.
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Agenda item
Discussions and decisions
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Actions
One issue that the committee raised was where surgical procedures are being considered
discussions about the surgery should take place within a suitably experienced MDT. The
committee agreed to include this in organisation of care rather than a standalone statement.
Access to specialist services
The committee agreed not to prioritise this area as access to specialist services should already be
being delivered. They highlighted that if people access the correct services then they should
receive the correct care package. The committee discussed ways of measuring acute episodes of
pain and highlighted that although this cannot be included in the quality standard this could be
something to highlight for future research. The committee also discussed information giving
around specialist services but agreed that there is nothing different to the information giving
statement in the patient experience QS.
Palliative care
The committee was informed that there will be a specific guideline and quality standard developed
on palliative care in infants and children. The committee also highlighted that there are national
initiatives around palliative care for children and young people. Therefore the committee agreed
not to prioritise this area.
Additional areas
Stakeholders suggested a number of other areas for prioritisation which the committee agreed not to
prioritise:
 Staff training - all quality standards have a section in the introduction around staff competencies.
 Cancer registrations - the committee agreed that this is out of NICE’s remit although did highlight
a concern that data from England, Scotland and Wales is no longer being analysed as a whole
due to funding issues.
 Patient experience surveys - the committee again agreed that this is not within NICE’s remit and
should be a national policy decision.
 Staff ratios - the committee highlighted that there are no specific evidence based
recommendations for this in the NICE guideline. Additionally it was felt this is a generic issue, not
specific to cancer and therefore should not be included.
 Best possible outcomes - the committee agreed that the purpose of a QS is to achieve best
possible outcomes and therefore is not for a quality statement.
5. QSAC specialist
committee members
AW asked the QSAC to consider the constituency of specialist committee members on the group and
whether any additional specialist members were required.
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Agenda item
Discussions and decisions
Actions
and stakeholder list
(part 1 – open
session)
Specialist members: It was agreed that a clinician who specialises in teenagers and young adults should
be included on the committee. NICE to follow this up.
NICE to recruit a clinician
who specialises in
teenagers and young
adults.
Stakeholder list: The QSAC reviewed the stakeholder list and agreed that the following organisation
should be approached to register as stakeholders for Children and young people with cancer:
 National Cancer Action Team
JeH to contact the
National Cancer Action
Team to invite them to be
a stakeholder.
6. Next steps and
timescales (part 1 –
open session)
JeH outlined what will happen following the meeting and any key dates for the children and young people
with cancer quality standard.
7. Any other
business (part 1 –
open session)
No other business was raised.
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Date of next meeting for Children and young people with cancer: 15 November 2013
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Date of next QSAC2 meeting: 12 September 2013
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