Quality Standards Advisory Committee 4

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Quality Standards Advisory Committee 4 meeting 30th April 2015

Quality Standards Advisory Committee 4 Multiple sclerosis – prioritisation meeting

Nutrition: improving maternal and child nutrition – post-consultation meeting

Minutes of the meeting held on Thursday 30th April 2015at the NICE offices in Manchester

Attendees

Standing Quality Standards Advisory Committee (QSAC) members

Damien Longson (DL) [Chair], Frances Garraghan (FG) [agenda items 7-12], Alaster Rutherford (AR) [agenda items 1-6], Rubin Minhas (RM) [agenda items 1-6], David Weaver (DW), Roger Hughes (RH), Allison Duggal (AD), Tim Fielding (TF), Zoe Goodacre (ZG), Julie Rigby (JR), Alison Allam (AA), John Jolly (JJ), Moyra Amess (MA), Michael Varrow (MV), John Walker (JW)

Specialist committee members

Multiple sclerosis – Paul Cooper (PC), Richard Warner (RW), Aleks de Gromoboy (AdG)

Nutrition: improving maternal and child nutrition – Helen Crawley (HC), Judith Jones (JJ), Val Finigan (VF), Bridget Halnan (BH)

NICE staff

Stacy Wilkinson (SW) [ agenda items 1-6], Tony Smith (TS) [agenda items 1-6], Sabina Keane (SK) [agenda items 7-12], Eileen Taylor (ET) [agenda items 7-12], Lisa Nicholls (LN), Nick Baillie (NB)

NICE Observers

Esther Clifford, Maxine Adrian-Fleet

Apologies

Standing Quality Standards Advisory Committee (QSAC) members

Harry Allen, Jane Bradshaw, Nicola Hobbs, Asma Khalil

Specialist committee members

Multiple sclerosis - Wendy Hendrie, Susan Hourihan

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Agenda item Discussions and decisions Actions

1. Welcome, introductions and plan for the day (private session)

DL welcomed the attendees and the Quality Standards Advisory Committee (QSAC) members introduced themselves.

DL informed the committee of the apologies and reviewed the agenda for the day.

2. Welcome and code of conduct for members of the public attending the meeting

(public session)

DL 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

DL 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. DL asked the specialist committee members to declare all interests. The following interests were declared:

Standing committee members

 RH – Patient Research Ambassador at Peterborough City Hospital, working with the research and development team at the hospital. None paid – just expenses. Will be promoting research projects with the staff and patients.

Specialist committee members

 AdG – volunteer on MS helpline. None paid.

Minutes from the last meeting

The committee reviewed the minutes of the last meeting held on 26th March and confirmed them as an accurate record. 4. Topic session – multiple sclerosis (public session) 4.1 and 4.2 Topic overview and summary of engagement responses

SW and TS presented the topic overview and a summary of responses received during engagement on multiple sclerosis (MS).

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Agenda item Discussions and decisions Actions

4.3 Prioritisation of quality improvement areas

SW and DL led a discussion in which areas for quality improvement were prioritised.

The QSAC considered the following areas as outlined in the briefing paper prepared by the NICE team:

 Diagnosing MS

 Providing information and support

 Coordination of care

 Management, rehabilitation and relapse

Diagnosing MS

The committee discussed early diagnosis and timeliness of referral. This area was not prioritised for a quality standard statement because people with MS present with symptoms that may be caused by other conditions. The committee felt that timeliness of referral from primary care would be a difficult area to establish as a measurable statement – it may be reasonable for a person to see a GP several times before being referred to a neurological consultant. The NICE guideline does not include recommendations around timescale for referral. Early diagnosis of MS may not always influence outcomes.

The committee discussed diagnosis only by a consultant neurologist, and the diagnosis process. It was noted that MRI scans are used to confirm a diagnosis, and that the period around diagnosis needs particular support from a multidisciplinary team to reduce anxiety and to enable people to begin to gain an understanding of the condition. The committee agreed that information and support in the period of diagnosis, up to the follow-up appointment after 6 weeks, is an area for a potential quality standard statement.

Providing information and support

The committee discussed ongoing information and support, including access to an MS nurse and a single point of contact. It was noted that MS is the main need for chronic disease management in younger adults, and that this is an area for quality improvement. The committee agreed thatongoing responsive support (including regularly reviewing support needs and points of contact) is an area for a

potential quality statement, and the NICE team was asked to refer to the roles of different members of the multidisciplinary team (including occupational therapists, physiotherapists and MS nurses)

in supporting definitions. The benefits to individual patients of disease modifying therapies (DMTs)

should be considered as an aspect of ongoing responsive support.

NICE team to draft quality statements about:

Initial support and information for people diagnosed with MS. Ongoing responsive support (including regularly reviewing support needs and points of contact). Condition management supported by healthcare professionals with expertise in the management of MS. Rapid relapse

management for people with MS.

Annual review for people with MS.

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The committee discussed the patient experience quality standard (QS15). They felt that QS15 on its own does not cover the disease-specific issues faced in MS, but felt that statements 12 (on coordination of care through the exchange of patient information) and 14 (information for patients on contacting healthcare professionals) could be cross referred to in this quality standard.

The committee agreed that a single point of contact for direct access to the MDT for people with MS was a key aspect of ongoing responsive support. There was some discussion about people with MS being given contact details for call handlers with direct access to the MDT, as long as the point of contact enabled efficient and rapid access to relevant members of the multidisciplinary team

Coordination of care

The committee discussed the MDT approach as highlighted by stakeholders at consultation. It was noted that different MDT models are used in different places, and that the recommendations in the NICE guideline do not cover models of care. A specific MDT approach was therefore not progressed as a potential quality statement.

The committee discussed the importance of having rehabilitation teams with expertise in MS rather than generalist services. It was felt that MS teams are sometimes merged with services for older people, such as stroke teams, and therefore may not address the specific support needs of people with MS (especially younger adults with MS). People with MS tend to be of working age and their support needs include those relating to employment and pregnancy.

The committee agreed that care for people with MS by a multidisciplinary team with relevant expertise in MS is an area for a potential quality standard statement.

Management, rehabilitation and relapse

The committee discussed the areas highlighted by stakeholders at consultation which were exercise, annual review and relapse and exacerbation.

Relapses were seen as a potential marker for referral for DMT, and should be treated promptly. Recommendation 1.7.5 in NICE clinical guideline 186 covers treatment for relapse within 14 days. This may be challenging and dependent on an effective local pathway.

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Agenda item Discussions and decisions Actions

The committee agreed that rapid management of relapse for people with MS is an area for a potential quality standard statement.

Annual review can capture the number of relapses, identify problems and prevent hospital admission. The committee noted that an annual review can pick up people who are not in regular contact with services and who may have more complex issues. An annual review is an opportunity to identify changes that people who are high functioning are unaware of, to inform them about treatment options and review management of MS. It was suggested that the offer of a review could be easier to measure than receiving a review. The committee discussed which healthcare professionals should provide an annual review, and agreed (in line with NICE clinical guideline 186 recommendation 1.6.2) that it should be a healthcare professional with expertise in MS (such as an MS nurse).

The committee agreed that provision of an annual review for people with MS is an area for a potential quality standard statement.

The committee discussed the potential for a quality statement on exercise programmes. It was noted that graded exercise with cognitive behavioural techniques can relieve fatigue associated with MS and that people with MS have difficulty accessing exercise options available to the public (such as gyms and swimming pools). However, the committee felt that exercise programmes could be covered under other quality improvement areas, such as ongoing condition support from an MDT, and agreed not to progress a separate statement on this.

Additional areas

The following additional areas were discussed by the committee, but not progressed as potential quality statements:

Vitamin D: The committee noted that there is no evidence for the use of vitamin D to treat MS.

Use of MRI for diagnosis and monitoring: There is no evidence on altering treatment on the basis of an MRI scan; the committee did not think there should be continued scanning.

Respiratory abnormalities: This was not felt to be a key area for quality improvement.

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Agenda item Discussions and decisions Actions

measures, rather than through a quality standard statement.

Research and evidence appraisal suggestions: Quality standards do not review or re-appraise the underlying evidence base.

Disease modifying therapies: This would be covered by the proposed statements on ongoing responsive care, relapse management and annual review rather than as a separate statement. It was also noted that disease modifying therapies are covered by the medicines optimisation quality standard (in development).

5. QSAC specialist committee members and stakeholder list (part 1 – open session)

NB asked the QSAC to consider the constituency of specialist committee members on the group and whether any additional specialist members were required.

Specialist members: It was agreed that no additional Specialist Committee Members are required.

Stakeholder list: The QSAC reviewed the stakeholder list and agreed that that they would send any

suggestions for additional stakeholders to LN.

6. Next steps and timescales (part 1 – open session)

LN outlined what will happen following the meeting and any key dates for the multiple sclerosis quality standard.

7. Welcome and code of conduct for members of the public attending the meeting

(public session)

DL 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.

8. Committee business (public session)

Declarations of interest

DL 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. DL asked the specialist committee members to declare all interests. The following interests were declared:

Standing committee members

 No further conflicts Specialist committee members

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Agenda item Discussions and decisions Actions

Member of Unicef Baby Friendly Designation Committee and NICE panel reviewing the cost-effectiveness of universal healthy start vitamins.

 JJ – Work on cracking good VF – Previously member of UNICEF Baby Friendly designation committee

 BH – no conflicts

9. Topic session – nutrition: improving maternal and child nutrition (public session)

The committee then moved on to discuss nutrition: improving maternal and child nutrition.

9.1 Recap of prioritisation exercise

ET and SK presented a recap of the areas for quality improvement discussed at the first QSAC meeting for nutrition: improving maternal and child nutrition.

At the first QSAC meeting on 19th December 2015 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:

 Healthy start – use of food vouchers

 Healthy start – healthy start vitamin scheme

 Breastfeeding – initiation and duration/continuation

 Weaning/complementary feeding

 Maternal diet pre-conception

The full rationale for these decisions is available in the prioritisation meeting minutes which can be found here: http://www.nice.org.uk/Media/Default/get-involved/meetings-in-public/quality-standards-advisory-committee/qsac4/QSAC4minutes19122014Final.pdf

ET notified the committee of the title change of the quality standard from maternal and child nutrition: improving nutritional status to nutrition: improving maternal and child nutrition. This is an editorial change as the first part of the title defines where it will be presented online to improve user accessibility..

9.2 and 9.3 Presentation and discussion of

ET and SK presented the committee with a report summarising consultation comments received on nutrition: improving maternal and child nutrition. The committee was reminded that this document provided a high level summary of the consultation comments, prepared by the NICE quality standards team, and

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stakeholder feedback and key themes/issues raised

was intended to provide an initial basis for discussion. The committee was therefore reminded to also refer to the full list of consultation comments provided throughout the meeting.

The committee was informed that comments which may result in changes to the quality standard had been highlighted in the summary report. Those comments which suggested changes which were outside of the process, were not included in the summary but had been included within the full list of comments, which was within the appendix. These included the following types of comment:

 Relating to source guidance recommendations

 Suggestions for non-accredited source guidance

 Request to broaden statements out of scope

 Inclusion of overarching thresholds or targets

 Requests to include large volumes of supporting information, provision of detailed implementation advice

 General comments on role and purpose of quality standards

 Requests to change NICE templates

9.5 Discussion and agreement of final statements

The committee discussed each statement in turn and agreed upon a revised set of statements. These statements are not final and may change as a result of the editorial and validation processes.

Draft Quality Statement 1:Women who request pre-conception advice and have a BMI of 30 or

more are advised to lose weight before becoming pregnant.

The Specialist Committee Members (SCMs) felt that the timing of this quality standard (QS) may not be appropriate with the consultation out on free universal Healthy Start vitamins. The NICE team responded that QS are reviewed on an annual basis so there would be the opportunity to review this QS then.

The NICE team provided an overview of stakeholder comments. The small population size was

mentioned, as stakeholders noted that not all pregnancies are planned. The alternative suggestion was to focus on information and supporting weight loss. Support for healthcare professionals was also mentioned as the point of contact and for post-delivery weight management advice.

The committee discussed BMI of 30 and felt 25 could be appropriate as it could maximise the statement’s impact. Another suggestion was to focus on a healthy BMI rather than a set figure. A low BMI would also

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Agenda item Discussions and decisions Actions

need to be considered as a potential risk. It was felt the statement should be on tailored information on losing weight and diet in general. Also advice on folic acid, eating well and maintaining a healthy weight is important as this QS is focused on nutrition.

It was queried whether all women should be offered advice and not a target population. There were however no recommendations to support this suggestion.

Who is giving the advice was questioned and how measurable this would be. It was suggested that women attending family planning or sexual health clinics could be given this information.

It was noted that the population of women with a BMI of 30 or more who request pre-conception advice is small so targeting all women of child bearing age even where advice is not requested was suggested However narrowing the population and targeting people who seek pre-conception advice was felt to be more measurable.

It was discussed that a BMI of 30 is not uncommon. Losing weight before becoming pregnant is beneficial but there was a query on whether this is necessary. The Specialist Committee Members confirmed that evidence shows this weight loss is in fact important for the mother and baby.

The committee discussed broadening the statement to focus on nutritional health rather than the BMI-

Women who request pre-conception advice should be given nutritional advice for a healthy diet and weight.

It was suggested to include the words ‘advice’ and ‘support’ in the statement wording. Also targeted and tailored advice was suggested for inclusion.

A request was made by a Committee Member to position the statement in a more positive way as the current statement was quite negative. Offering weight loss support and dietary advice would also be useful to include.

It was agreed the NICE team would re-draft this statement by focusing on NICE guideline PH11 recommendation 4.

NICE team to re-word statement to include a structured weight-loss support programme for women with BMI of 30 or more following childbirth The committee discussed both draft quality statements 2 and 3 together as the SCMs felt these

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Agenda item Discussions and decisions Actions

Draft Quality Statement 2:Pregnant and breastfeeding women are given information on how to

access Healthy Start maternal vitamin supplements

The NICE team provided an overview of stakeholder comments. Eligibility issues were raised. Folic acid was mentioned as Healthy Start vitamin coupons cannot currently be received until well after 10 weeks of pregnancy, which is after the time when folic acid is needed. Accessibility was also noted as an issue as where they can be purchased can vary. Concern was raised over deprived women and children and whether the statement should focus on vitamins. Other vitamins, such as multivitamins were also suggested for inclusion explaining their unsuitability when pregnant. Data collection for this was also mentioned.

Draft Quality Statement 3:Parents and carers of children aged 6 months to 4 years are offered

Healthy Start children’s vitamin supplements if they are eligible

The NICE team provided an overview of stakeholder comments. Accessibility was raised as an issue. It was suggested that generic supplement information should be given as well as specific products. It was felt education and awareness was needed on Healthy Start and vitamin D supplements. It was suggested that the statement should re-focus on the relevant healthcare professionals as per NICE guidance PH11, recommendation 5. Stakeholders suggested that the rationale should state that vitamin D deficiency can arise due to skin pigmentation and therefore there are groups within the population who are at higher risk. Contact for the Healthy Start programme was also noted as important.

Initially this was one statement but the NICE team separated into two. Statement 2 included all pregnant and breastfeeding women not just those eligible but the children in statement 3 needed to be part of an eligible family.

It was suggested to retain focus on families eligible for the Healthy Start scheme and then these statements could be merged into one.

It was suggested a possible statement could be women and families eligible to the Healthy Start scheme should be signposted.

The committee suggested stating buying Healthy Start vitamins which are still available to purchase but also to note that other vitamins are accessible.

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Agenda item Discussions and decisions Actions

The NICE team will draft one statement based on the guidance including action points on signing the scheme application forms, coupons for redeeming vitamins and taking these vitamins. Concern was raised by the NICE team that signing application forms goes beyond the guidance. The NICE team to look into this further focussing on NICE guideline PH11 recommendation 4.

NICE team to merge statement 2 and 3 to focus on pregnant women and children being advised about the healthy start scheme

Draft quality statement 3 was discussed alongside draft quality statement 2 so the two could be potentially merged. A new statement 3 on eating well and being healthy in pregnancy was suggested.

The SCMs reported that maternal diet in pregnancy was not done well. The SCMs suggested statement wording on offering meaningful advice regarding healthy eating and breastfeeding.

The SCMs suggested that this information should be given at the mandated health visitor appointment in pregnancy.

NICE team to focus a new statement on recommendation 5 of NICE guideline PH11 on diet in pregnancy with the rationale to include the importance of enabling all pregnant women. Team to check whether this recommendation states when information provision would happen.

NICE team to draft a new statement on advice on healthy eating and information on breastfeeding

Draft Quality Statement 4:Parents and carers receiving Healthy Start food vouchers are given

advice on how to use them to increase the amount of fruit and vegetables in their family’s diet

The NICE team provided an overview of stakeholder comments. Comments raised the issue of provision and behavioural change, so empowering families with practical tools and advice would be helpful. The issue of commissioning was also mentioned. Women who are 10 weeks pregnant are eligible and it was suggested to highlight this group in the statement. Accessibility was also noted. Stakeholders also suggested refocussing the statement on information and support rather than advice provision. Ineligible products and barriers to implementation were also raised as concerns.

The committee discussed this statement and it was felt by the SCMs that only minimal changes would need to be made.

Who would be giving the advice and support was queried. Would it be health visitor and midwives or family

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Agenda item Discussions and decisions Actions

There was a suggestion to include pregnant women and add milk if possible to this statement. NICE team to include pregnant women and milk to this statement if possible.

pregnant women and milk to this statement.

Draft Quality Statement 5:Women receive breastfeeding support from a service that uses an

evaluated, structured programme

The NICE team provided an overview of stakeholder comments. Comments raised on the cross link between the Postnatal Care Quality Standard (QS37) was highlighted and other quality standards. Bottle feeding was mentioned, as well as a structured programme and the Healthy Start scheme. Discussions in pregnancy was noted as well as the logistics of data collection on this.

Targeted breastfeeding information and advice in hospital during pregnancy was mentioned as well as other settings such as maternity units, GP practices and health breastfeeding services.

The NICE team noted that the delivery across all providers was covered in the statement’s definition section.

The committee suggested adding UNICEF Baby Friendly Initiative to the statement as this is in the guideline. It was unsure if this change could be made as it cross references with the Postnatal Care Quality Standard. There were discussions on including this and seeing whether this would receive NICE Executive board approval. .

The committee decided to progress this statement as it is worded as it is closely linked with postnatal care and concerns were raised about the statement being potentially dropped.

NICE team to keep this statement as it but include the full statement within this Quality Standard and not just a cross link to Postnatal Care Quality Standard (QS37).

NICE team to keep this statement and progress as it is. Include full wording on this

statement and not just a crosslink from Postnatal Care QS 37.

Draft Quality Statement 6:Parents and carers are given advice on starting their baby on solid food

at 6 months of age and gradually establishing a varied diet

The NICE team provided an overview of stakeholder comments. There was concern raised over the 6 months age, as it was felt this didn’t reflect the Department of Health advice to begin complementary feeding around 6 months. There was a suggestion to include that feeding should be age appropriate or

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Agenda item Discussions and decisions Actions

that breastfeeding is the main source of nutrition up to 6 months where food may be added earlier. Provision of advice was raised on when this should be appropriately provided. It was felt the statement should focus on information and support rather than provision at around 6 months. Tooth decay was mentioned as this could occur if there is a delay in moving from bottle to cup. Data collection was also mentioned as an issue.

The committee discussed changing the statement wording to ‘about’ 6 months. The SCMs did not think gradual should be included as it is important to provide the baby with varied foods from the start. NICE team discussed changing to ‘from 6 months’ as this is what is in the NICE guideline PH11,

recommendation 16 but the SCMs felt about 6 months is better and less specific. Including a wide variety of food in the statement wording was also suggested.

It was queried when advice should be given. Should this be done at 6-8 weeks? The SCMs confirmed this should be done by the health visitor at the 6-8 week mandated health visitor appointment.

The committee discussed what the focus should be. Is it the 6 months or the advice? Could it be re-worded to say at the right time or in a timely manner?

NICE team to look into this further, checking the guidance on this. The team raised concern on including the wording ‘about’ 6 months in the statement as this is not measurable. Team to go back to the guidance and attempt to add measurability to this statement. The team will try to include ‘a wide variety of foods’ in

statement. NICE team to include

introducing a variety of food in statement and add at the 6-8 week visitor appointment in rationale/measures. Additional areas suggested by stakeholders

Additional areas for statements suggested at consultation were presented by the NICE team. The

suggestions were discussed but not progressed as they had already been discussed either in the previous committee meeting on this topic, in above statements or there were no recommendations for them.

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quality standard (part 1 – open session)

standard and asked the QSAC to consider whether any key organisations were missing. HC to contact RCPCH as she has a contact. Any other suggestions to be emailed to LN.

11. Next steps and timescales (part 1 – open session)

LN outlined what will happen following the meeting and any key dates for the nutrition: improving maternal and child nutrition quality standard.

12. Any other business (part 2 – Private session)

No AOB items raised.

DL thanked the specialist committee members for their input into the development of this quality standard,

http://www.nice.org.uk/Media/Default/get-involved/meetings-in-public/quality-standards-advisory-committee/qsac4/QSAC4minutes19122014Final.pdf