Quality Standards Advisory Committee 2 Children and young people with cancer – prioritisation meeting th 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 1 of 6 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 th 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. Quality Standards Advisory Committee 2 meeting 100713 2 of 6 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. 3 of 6 Agenda item Discussions and decisions    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. Quality Standards Advisory Committee 2 meeting 100713 4 of 6 Agenda item Discussions and decisions   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. Quality Standards Advisory Committee 2 meeting 100713 5 of 6 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. th Date of next meeting for Children and young people with cancer: 15 November 2013 th Date of next QSAC2 meeting: 12 September 2013 Quality Standards Advisory Committee 2 meeting 100713 6 of 6