Abdominal Aortic Aneurysm (AAA) Screening Programme

Transcription

1 Abdominal Aortic Aneurysm (AAA) Screening Programme Consultation Feedback April 2011

2 Healthcare Improvement Scotland 2011 First published April 2011 You can copy or reproduce the information in this document for use within NHSScotland and for educational purposes. You must not make a profit using information in this document. Commercial organisations must get our written permission before reproducing this document.

3 About Healthcare Improvement Scotland Healthcare Improvement Scotland was launched on 1 April This health body was created by the Public Services Reform (Scotland) Act 2010 and marks a change in the way the quality of healthcare across Scotland will be supported nationally. Our vision Our vision is to deliver excellence in improving the quality of the care and experience of every person in Scotland every time they access healthcare. Our purpose Our organisation has key responsibility to help NHSScotland and independent healthcare providers to: deliver high quality, evidence-based, safe, effective and person-centred care, and scrutinise services to provide public assurance about the quality and safety of that care. What we do We are building on work previously done by NHS Quality Improvement Scotland and the Care Commission, and our organisation includes: Healthcare Environment Inspectorate Scottish Health Council Scottish Health Technologies Group Scottish Intercollegiate Guidelines Network (SIGN), and Scottish Medicines Consortium. Our work programme supports Scottish Government priorities, in particular those arising from the Healthcare Quality Strategy for NHSScotland. Our work encompasses all three areas of the integrated cycle of improvement with patient focus and public involvement at the heart of all that we do. The integrated cycle of improvement involves: developing evidence-based advice, guidance and standards for effective clinical practice driving and supporting improvement of healthcare practice, and providing assurance about the quality and safety of healthcare through scrutiny and reporting on performance. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme

4 Consultation The draft clinical standards for abdominal aortic aneurysm were published in November A formal 12 week consultation was held (November 2010 to February 2011) to enable professional groups, health service staff, voluntary organisations and the public to provide feedback and to influence the further development of the standards. We approached professional bodies and organisations (such as The Scottish Practice Nurses Association and the REACH Community Health Project) and healthcare professionals involved in the delivery of abdominal aortic aneurysm (AAA) screening services. All interested parties were encouraged to provide feedback using a variety of media: the NHS Quality Improvement Scotland website the NHS Quality Improvement Scotland AAA screening programme community site the National Services Division AAA screening programme website an NHS Quality Improvement Scotland dedicated address and telephone line, and a feedback form provided in the distributed draft standards. In addition, four focus groups were held. The sessions included men from seldom heard groups, such as participants with learning disabilities and associated nursing staff. These sessions concentrated on aspects of person-centred standards, such as provision of information and support to men who will be invited to participate in the screening programme. Consultation feedback During the consultation NHS Quality Improvement Scotland received 130 comments from a variety of sources, including: five NHS boards the Society and College of Radiographers NHS board screening co-ordinators, and four focus groups. NHS Quality Improvement Scotland received an encouraging response to the draft standards. This document includes all the comments received 1. It also outlines the short-life working group s response to each comment and the rationale behind each response. Information is also included on what changes have been made to either the standards document and/or the self-evaluation tool. 1 All comments are presented in this document as they were submitted to NHS Quality Improvement Scotland. However, all identifiable information has been removed. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme

5 Throughout this document comments have been classified as: Actioned: where the short-life working group agreed with the comment and amended the final standards accordingly, Noted no action taken: where the short-life working group disagreed with the comment, and has provided a rationale for their response. Noted: where no action was required. Of the 130 comments: 41 comments were Actioned ; 70 were Noted no action taken ; and 19 were Noted. Feedback from the focus groups has been presented to NHS Health Scotland, which is responsible for the development of AAA screening programme information. NHS Quality Improvement Scotland would like to thank everyone who submitted comments during the consultation. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme

6 General: Audit 0.1 How many of the standards will be measurable, Noted - no action taken. 123 with data automatically derived and input into the IT system? The short-life working group agreed that all of the non process-based standards can be reported via the IT system. The standards will be used to help inform the development of the IT system. Furthermore, in order to ensure the standards are measurable, the short-life working group included representation from Information Statistics Division. General: Audit/reporting 0. Overall we are happy that these standards are Noted possible using a combination of the proposed minimum dataset, local reports and national datasets (eg SMR01, GRO). General: Audit/reporting 0. Some of the standards highlighted as Information Actioned Statistics Division owned could actually be extracted locally from the call/recall system by the The self-evaluation tool has been amended to individual boards/units. reflect the range of data sources available to NHS boards. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 6

7 General: AAA screening 0.2 It is worth noting that [we are] currently working Noted. 104 service through the AAA screening standard document to ensure that all it contains is useful towards the ultimate aim that the published standards improve the quality of care delivered within the AAA screening programme and by the vascular services to which men with a screen-detected aneurysm are referred for assessment and surgery. General: Content 0.2 The document is very well written and Noted. 133 comprehensive and follows a logical pattern. General: AAA screening 0.2 The clinical standards for the AAA screening Noted. 101 service programme in NHSScotland are welcomed, in particular the strong and coherent link with existing standards produced for England, whilst changing a number to better reflect the situation in NHSScotland. It is important that all data that needs to be collected is relevant to, and agreed to be important by, the clinical teams involved: as well as understandable to the public who are to be assured re the quality of service. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 7

8 General: Content 0.3 What is wrong with just having key performance Noted - no action taken. 129 indicators as a service measure? Is there a requirement for the additional (qualitative) The short-life working group stressed that the standards? abdominal aortic aneurysm screening standards are underpinned by the abdominal aortic aneurysm screening programme Key Performance Indicators (KPIs) led by National Services Division (NHS National Services Scotland). However, there will be other criteria which require the collection of qualitative data, for example, around the person centred standards. In addition to this, Healthcare Improvement Scotland and NHSScotland have an ongoing commitment to capturing service users' experiences through, for example, the Participation Standard and the Better Together programme. It is envisaged that these standards will support these activities. General: Content 0.3 Overall, we found most of the draft standards Noted. 114 acceptable. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 8

9 General: 0.4 Is it possible to 'cost' the standards against Noted - no action taken. 132 Implementation and implementation as a cost-effectiveness exercise review for each NHS board, including accounting for time The short-life working group agreed that this is spent to gather evidence for the standards and outwith their remit. preparing for review visits? This could show the viability of introducing the screening service in a particular board. General: 0.4 Any planned review of achievement of the Noted. 102 Implementation and standards need to be based on the agreed review principles of proportionate and targeted scrutiny. It is assumed this will be based on a selfassessment against the criteria with completion being done on the basis of the consortia which are to be formed to deliver the screening programme, as well as any surgical collaborative arrangements already in place to deliver the follow-up clinical assessment and surgical intervention, should this be required. There perhaps needs to be a clear statement by NHS Quality Improvement Scotland (and in anticipation of future external scrutiny by NHS Health Scotland regarding the level of review these standards will be subject to, along with an advisory timeline. This statement should make clear that it would be appropriate for collaborative groups, rather than individual NHS boards, to complete any self-assessment even if the return is then scrutinised by more than one NHS board/clinical governance committee. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 9

10 General: 0.4 It would be beneficial to identify key standards that Noted - no action taken. 128 Implementation and are required to be achieved in order to ensure a review safe service. This key message requires being The abdominal aortic aneurysm screening delivered across NHSScotland. standards are underpinned by the abdominal aortic aneurysm screening programme Key Performance Indicators (KPIs) led by National Services Division (NHS National Services Scotland). General: 0.4 What impact to the service will there be in respect Noted - no action taken. 126 Implementation and of time to complete these standards - has there review been an impact monitoring exercise undertaken? The short-life working group agreed that this is How much can be done by, for example, the outwith their remit. sonographer, manager, and/or screening co-ordinator? General: 0.4 Currently finding it difficult to imagine the Noted - no action taken. 130 Implementation and implementation of these standards in reality: how review will they translate in real-time? Suggestion to Healthcare Improvement Scotland, is committed to review their implementation (in conjunction with ensuring that its standards, along with other the evidence base?) as a reality check? deliverables, remain relevant and current. As a result these standards, along with other NHS Quality Improvement Scotland and Healthcare Improvement Scotland standards, may be reviewed in the future. Any such review would consider the evidence base, the continued relevancy and implementation of the standards. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 10

11 General: 0.4 How will Healthcare Improvement Scotland Noted - no action taken. 131 Implementation and implement the clinical standards for AAA across review NHSScotland? The development of the abdominal aortic aneurysm screening standards is part of the work that Healthcare Improvement Scotland will be undertaking in relation to the external quality assurance of national screening. The work programme (which will allow Healthcare Improvement Scotland to be assured of the level of quality of screening services) is being developed with stakeholders involved in the delivery of screening services. The assessment of NHS boards, in relation to the abdominal aortic aneurysm screening standards, is part of this programme. General: 0.4 The development of standards requires creating Noted. 127 Implementation and standards that are realistic, i.e. achievable (not review aspirational), which is indicated by the draft standards for AAA. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 11

12 General: Scope 0.5 There remains a challenge in terms of knowing Noted. 103 where the screening programme ends and assessment of clinical standards in terms of vascular surgery begins. There is an absolute need for outcomes to be made available to the screening programme to inform and give confidence to individuals being referred for assessment: whilst recognising that the AAA screening programme is not, per se, intended to drive a change in vascular surgery arrangement - this is a different review being led by the Chief Medical Officer. General: Resources 0.6 The initial business case proposed was based Noted - no action taken. 87 on the cost of six centres. There are now nine centres proposed and there are concerns over The short-life working group agreed that this is whether additional money will be made available outwith the scope of the standards. However, this or whether the original money will become diluted feedback has been sent to National Services as a result of these additional centres. Division for consideration and action, as required. General: Resources 0.6 There are concerns over the perennial issue of Noted - no action taken. 88 the cost of intervention: this is estimated to be at least 50% but may be nearer 70-80% for EVAR The short-life working group agreed that this is (Endovascular Aneurysm Repair). outwith the scope of the standards. However, this feedback has been sent to National Services Division for consideration and action, as required. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 12

13 Introduction 1 Should there be a short paragraph at the Actioned. 6 beginning to explain the transition from NHS Quality Improvement Scotland to HIS? The standard document has been amended: a new section has been added on the background of Healthcare Improvement Scotland. Page 4, para Should this be 30 mm and over rather than over Actioned mm to be consistent with the rest of the document? The standard document and self-evaluation tool have been amended: 30 mm. Page 4, para Suggestion to re-word the aneurysm size Actioned. 125 gradings, including reference to small, medium or large. The standard document and self-evaluation has been amended: - 71% of cases have a small aneurysm (between 30 and 44 mm) - 17% of cases have a medium aneurysm (between 45 and 54 mm), and - 12% of cases have a large aneurysm (greater than or equal to 55 mm). Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 13

14 Page 4, para Suggested rewording: Actioned. 39 The prevalence of AAA is gradually increasing over time and approximately 5% of men in Scotland aged between 65 and 74 years have the condition. Of those men who are found to have an aneurysm it is: Bullet 1 - defined as small if between mm in 71% of cases Bullet 2 - defined as medium if between mm in 17% of cases, and Bullet 3 - defined as large if greater than 55 mm in 12% of cases. The standard document has been amended. However, Bullet 3 (large aneurysm) - has been further amended to: - 12% of cases have a large aneurysm (greater than or equal to 55 mm). Page 4, para Suggested rewording: Noted - no action taken. 40 Current experience is that when an aneurysm ruptures...85%. Following discussion, the short-life working group agreed that the current wording is appropriate. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 14

15 Page 4, para Suggested rewording: Actioned. 41 The proposed delivery of the Scottish AAA screening service will be aligned to the UK National Screening Committee (UKNSC) recommendations11, namely, the setting up of a national screening programme, with regional centres, which in turn will link with appropriate NHS board (to form collaborative groupings) to provide ultrasound screening of the abdominal aorta for men aged 65. The NHS board collaborative groupings are provided in Appendix 2. The standard document has been amended: revised wording, as suggested, has been adopted. Page 5, para Use of the term 'evidence-based' standards - Noted - no action taken. 120 suggestion to include an expiry date against evidence listed, as there is a likelihood of the The short-life working group agreed that it is not screening programme 'developing' further in the possible to set a specified 'expiry date' for the coming months/first year, and that evidence will standards. Rather there is a commitment from require being reviewed. Healthcare Improvement Scotland that the evidence base will be periodically reviewed to ensure that the standards remain up-to-date. This review would highlight the need to revise the standards as opposed to a set expiry date. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 15

16 Page 5, para Suggested rewording: Actioned. 42 For information, details of the KPIs for the screening programme are provided in Appendix 4 and membership of the short-life working group in Appendix 5. The standard document has been amended: revised wording, as suggested, has been adopted. Page 5, para 6, 2.3 Suggested rewording: Actioned. 43 sentences 2 and 3 Some criteria are essential (E) in that it is The standard document has been amended: expected that they will be met wherever a service revised wording, as suggested, has been adopted. is provided. Other criteria are desirable (D) in that they are being met in some parts of the service, and demonstrate increasing levels of quality, which other providers of a similar service should strive to achieve. Page 6, para Suggested rewording: Actioned. 44 They apply to primary and secondary care settings The standard document has been amended: within an NHS board where AAA screening revised wording, as suggested, has been adopted. services are provided to all men aged 65 and the option to self refer into the programme will be available to all men aged 66 and over, regardless of race and ethnicity, religion or belief, disability and sexual orientation. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 16

17 Page 6, para Is 75 years of age a cap on the self-referral age? Actioned. 135 Doesn't seem to be discussed anywhere else in the documents. The standard document has been revised to ensure clarification. The short-life working group agreed there is no cap on the self-referral age. Self-referral protocols will be locally developed. Page 6, para A paragraph discusses that AAA screening Noted. 96 services will be provided to all male patients aged Men older than 65 can request screening but it will not be directly targeted at them. The uptake by men aged greater than 65 will impact on numbers, resources and staffing. The numbers may be high when fully rolled out with attendant publicity. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 17

18 Page With reference to the table. Radiographer is fine Actioned. 97 (there may be some involved), sonographer is fine but this title is not protected and can be The glossary has been amended. misused and misunderstood. We feel it is important that the term 'sonographer' is only used It should be noted that the glossary definitions for qualified staff holding the equivalent of a CASE should be accessible to all, including service users, accredited PGC or PGD or individual families and carers, and non abdominal aortic accreditation by the SVT. There should be a clear aneurysm staff. Technical descriptions or distinction in the programme between these definitions are, therefore, not included in the glossary. qualified sonographers and the 'screeners' who will undertake the focused AAA examinations. A possible (but not yet SCoR approved) definition of a sonographer is as below. We feel that a radiographer/sonographer category is not then required as why not then a vascular scientist/sonographer, nurse/sonographer category etc and it all gets rather complicated. Sonographer - possible definition: A healthcare professional who performs and reports diagnostic and screening ultrasound examinations. They will hold qualifications equivalent to a Postgraduate Certificate or Diploma in Medical Ultrasound that has been accredited by the Consortium for the Accreditation of Sonographic Education (CASE). They are either not medically qualified or hold medical qualifications but are not registered with the General Medical Council as a doctor in the UK. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 18

19 Page 7 (also applicable 2.5 Sonographer and radiographer sonographer? Noted - no action taken. 11 to glossary) What is the difference? Essentially, there are vascular techs and sonographers most of whom It should be noted that the glossary includes are radiographers. Then there are radiologists. A definitions of terms used in the standards. bit puzzling. Page 7, para 1 2. Suggested rewording: Actioned The standards apply to all clinical professions The standards document has been amended: involved in the provision of screening for all revised wording, as suggested, has been adopted. eligible people and for those who are identified as having an AAA within the NHS boards/collaboratives specified in Appendix 3. Page 7, table 1 2. With reference to the table of clinical professions Actioned involved in the provision of AAA screening services, suggestion to include Public Health. The standards document has been amended: revised wording, as suggested, has been adopted. Standard 1 5 Although it is at the discretion of health boards to Noted. 91 determine what level of staff is used, there is recognition that for many centres this may not be an appropriate use of a fully trained sonographers time. The accredited programme is suitable for assistant practitioners. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 19

20 Standard 1 5 Where level B (relating to essential) and level A Actioned. 49 (desirable) have been applied to all criteria, suggestion to amend to (E) for essential and (D) The standards document and self-evaluation tool for desirable, throughout. have been amended: revised levels adopted. Standard 1 5 Should an interventionalist radiologist be added Noted - no action taken. 136 to the list of AAA screening co-ordinating group (in Wales they undertake EVAR)? The short-life working group agreed that this is for NHS boards/collaboratives to determine. Standard 1 / 1a 5.1 Suggested rewording for standard statement: Noted - no action taken. 47 There are effective management arrangements to ensure that an effective Abdominal Aortic Aneurysm (AAA) screening programme is available and offered to all eligible male NHSScotland board residents. Following discussion, the short-life working group agreed that the wording included in the draft standard document is appropriate for the final standards: however, 'male' has been inserted into relevant text. Standard 1 / 1a.1 5. The service provision membership will include Noted sonography and additional input from radiology, therefore it is felt that this will provide good representation for imaging. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 20

21 Standard 1 / 1a.1 5. We do agree with the requirement for such a Actioned group to oversee the delivery and performance of AAA screening programme. This is an overly bureaucratic process - especially for small collaboratives/nhs boards, and a relatively small service. As all NHS boards have healthcare governance committees reporting to their boards, suggest that this standard is changed to an annual report being presented to the healthcare governance committee. This would be more proportionate - and have the advantage of linking with the overall clinical governance and patient safety responsibilities of the board. (We accept that the multidisciplinary steering group has been helpful for setting up the new systems/services for introducing the AAA screening programme.) The rationale has been amended to reflect the requirement for a multi-disciplinary team. Standard 1 / 1a.1 5. We believe that reference to consultant in public Actioned health medicine within the 'How will this be measured?' column should be changed to The self-evaluation tool has been amended: revised consultant in public health medicine/specialist in wording, as suggested, has been adopted. public health. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 21

22 Standard 1 / 1a.1, 1a.2, 5. Suggested rewording for measurements Actioned. 48 1a.3 1 provided: The self-evaluation tool has been amended: revised i. 1a.1 (measurement 3) - amend to table of wording, as suggested, has been adopted. scheduled meetings. ii. 1a.2 (measurement 1) - Community Health (CHI) based on protocol to identify eligible individuals for screening with the inclusion 'via an AAA IT download'. iii. 1a.3 (measurement 2) - Evidence of offering an invitation to AAA screening to all...% of eligible individuals invited (by NHS board/collaborative. (Removal of 'including those individuals not registered on CHI.) iv. 1a.3 (measurement 4) - Inclusion of 'Local' to beginning of equality and diversity impact assessment (EQIA) for AAA screening programme. Standard 1 / 1a and 1b 5. Suggestion to re-order standards 1a Actioned (management arrangements/effective screening programme) and 1b (screening programme in The standards document and self-evaluation tool line with national recommendations) to become have been amended: order of standards revised. standard 1b and 1a, respectively. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 22

23 Standard 1a and 4 5. To potentially increase the number of individuals Noted - no action taken eligible to participate in the screening programme, it was suggested that a 'blunt' The short-life working group agreed that specifying message, based on the AAA screening the detail of patient information is outwith the scope programme being a life-saving procedure, be of these standards. However, all feedback received included as part of the initial communication to from focus groups, and relating to patient to the target audience. information for the abdominal aortic aneurysm screening programme, has been forwarded to NHS Health Scotland for consideration and action, as required. Standard 1a and 4 5. To potentially increase the number of individuals Noted - no action taken eligible to participate in the screening programme, the following was suggested: - To The short-life working group agreed that the work collaboratively with charity organisations purpose of the standards is not to be prescriptive such as ENABLE. - To provide a mobile screening regarding the local delivery of the standards, rather service, particularly for remote and rural areas, this is for NHS boards/collaboratives to determine. providing an incentive for individuals who may be unwilling to participate. Standard 1b 5.2 We believe that there should be a criterion relating Noted - no action taken. 106 to there being a Lead Sonographer. The short-life working group agreed that this is for NHS boards/collaboratives to determine. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 23

24 Standard 3 7 There were a number of questions and concerns Noted - no action taken. 21 raised specific to the screening process, which may be useful information to include for the The short-life working group agreed that specifying benefit of patients. The questions were: the detail of patient information is outwith the scope of these standards. However, all feedback received 21(a) What is the timing for the process? from focus groups, and relating to patient 21(b) What happens afterwards? information for the abdominal aortic aneurysm 21(c) Where will the screening be done? screening programme has been forwarded to NHS 21(d) What is the process - is it invasive? Does it Health Scotland for consideration and action, as hurt? required. 21(e) When will I receive my results? 21(f) Are there any pre-screening requirements? Standard 3 7 It was requested that participants in the screening Noted. 70 process be respected, with the individuals feeling comfortable enough to be able to ask their named contact questions, whilst receiving answers in return at the time of receiving their results (positive or negative) and that appropriate time be allocated to this part of the screening process. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 24

25 Standard 3 7 The group requested they have the opportunity to Noted - no action taken. 68 have someone accompany them to the screening, if necessary. The short-life working group agreed that specifying the detail of patient information is outwith the scope of these standards. However, all feedback received from focus groups, and relating to patient information for the abdominal aortic aneurysm screening programme has been forwarded to NHS Health Scotland for consideration and action, as required. Standard 3 7 There was general agreement amongst the Noted - no action taken. 67 participants that it was important to include or highlight the following in the information provided The short-life working group agreed that specifying to individuals: the detail of patient information is outwith the scope of these standards. However, all feedback received - Why am I being screened? from focus groups, and relating to patient - What happens if you don't take part in information for the abdominal aortic aneurysm screening? screening programme has been forwarded to NHS - Are there any risks in taking part in the screening Health Scotland for consideration and action, as programme? required. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 25

26 Standard 3 7 Agreement that information provided to eligible Noted - no action taken. 66 individuals for AAA screening requires being consistent and that it is important to include a The short-life working group agreed that specifying named contact and telephone number to allow for the detail of patient information is outwith the scope personal contact (face-to-face or, alternatively, by of these standards. However, all feedback received telephone) should an individual (or friend, family from focus groups, and relating to patient member or carer) receiving a letter of invitation, information for the abdominal aortic aneurysm have any questions. It was also suggested that screening programme has been forwarded to NHS information be kept to a minimum to avoid Health Scotland for consideration and action, as overload. required. The short-life working group agreed the provision of named contact would not be feasible for NHS boards. Standard 3 7 Agreement that information provided to eligible Noted - no action taken. 19 individuals for AAA screening requires being clear, timeous and consistent, and should outline The short-life working group agreed that specifying the screening process (what is involved as part of the detail of patient information is outwith the scope the AAA screening process?). of these standards. However, all feedback received from focus groups, and relating to patient With reference to being timeous, a question was information for the abdominal aortic aneurysm asked as to how and when will the information be screening programme has been forwarded to NHS made available? At this point, reference was Health Scotland (who are leading the development made to the bowel screening 'package' of of patient information) for consideration and action, information, which was well received by the as required. recipient. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 26

27 Standard 3 7 In respect of information on screening, the Noted - no action taken. 34 following questions and issues were raised: The short-life working group agreed that specifying 34(a) Availability of the invitation letter's named the detail of patient information is outwith the scope contact (or alternative) to answer any questions a of these standards. However, all feedback received participant may have at the time of undergoing from focus groups, and relating to patient screening. information for the abdominal aortic aneurysm 34(b) Knowing where to go - clear directions to screening programme has been forwarded to NHS the applicable NHS board/screening unit. Health Scotland for consideration and action, as 34(c) Information specific to the screening required. process including what is going to happen (before, during and after)? With reference to 34(a) the short-life working 34(d) Will the process hurt? group agreed the provision of a named contact 34(e) What type of machine(s) is/are used as part would not be feasible for NHS boards. of the screening process? 34(f) What happens if you do not attend screening? Standard 3 7 There was general agreement amongst the Noted - no action taken. 20 participants that it is important to know what the results mean, that the benefits and risks be The short-life working group agreed that specifying outlined and that information should be provided the detail of patient information is outwith the scope in a variety of formats, including electronically and of these standards. However, all feedback received with a light background. from focus groups, and relating to patient information for the abdominal aortic aneurysm screening programme has been forwarded to NHS Health Scotland for consideration and action, as required. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 27

28 Standard 3 7 On the occasion that a screened participant may Noted - no action taken. 24 receive a positive result, this raised a number of issues and questions including: The short-life working group agreed that specifying the detail of patient information is outwith the scope 24(a) Will I need counselling? of these standards. However, all feedback received 24(b) What are the next steps (Relating to an from focus groups, and relating to patient individual's desire to know where they are in the information for the abdominal aortic aneurysm process) screening programme has been forwarded to NHS 24(c) Who can we contact, and when? Health Scotland for consideration and action, as 24(d) What if, during the screening process, they required. find something else? Standard 3 7 AAA screening promotion: To potentially increase Noted - no action taken. 37 the number of individuals eligible to participate in the screening programme, the following was The short-life working group agreed that specifying suggested: the detail of patient information is outwith the scope of these standards. However, all feedback received 37(a) Stressing the importance of maintaining from focus groups, and relating to patient good health and, in particular, the benefits of information for the abdominal aortic aneurysm attending for screening screening programme has been forwarded to NHS 37(b) Highlighting the potential seriousness Health Scotland for consideration and action, as should individuals not attend for screening, and required. 37(c) The need for NHS boards/screening units to consider the times of clinics and travel requirements (where applicable) in order to maximise attendance amongst participants eligible for screening, with a mechanism in place to review DNAs/CNAs by board/unit area on an on-going basis. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 28

29 Standard 3 7 There was general agreement amongst the Noted. 31 participants that it is important to highlight the general importance of maintaining good health and, in particular, the benefits of attending for screening. Standard 3 7 Where a problem (aneurysm) has been identified, Noted - no action taken. 71 the group requested that appropriate information (in answer to any questions asked) be made The short-life working group agreed that specifying available to take home for further reading. the detail of patient information is outwith the scope of these standards. However, all feedback received from focus groups, and relating to patient information for the abdominal aortic aneurysm screening programme has been forwarded to NHS Health Scotland for consideration and action, as required. Standard 3 7 On the occasion that a screened participant may Noted - no action taken. 36 receive a positive result, this raised a number of issues and questions relating specifically to the The short-life working group agreed that specifying treatment of AAA, including: the detail of patient information is outwith the scope of these standards. However, all feedback received 36(a) How long will it be before I receive from focus groups, and relating to patient treatment? information for the abdominal aortic aneurysm 36(b) What form does treatment take? screening programme has been forwarded to NHS 36(c) How long will I receive treatment? Health Scotland for consideration and action, as 36(d) When will treatment start? required. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 29

30 Standard 3 7 Suggested content to include in the promotion of Noted - no action taken. 26 the AAA screening programme: The short-life working group agreed that specifying 26(a) What are the percentage rates for AAA the detail of patient information is outwith the scope occurring amongst the target age group? of these standards. However, all feedback received 26(b) Why does an aneurysm occur? from focus groups, and relating to patient 26(c) Are there any underlying signs? information for the abdominal aortic aneurysm 26(d) Why is the screening programme aimed at men aged 65 to 74 years of age only? screening programme has been forwarded to NHS Health Scotland for consideration and action, as required. Standard 3 7 Agreement that information provided to eligible Noted. 28 individuals for AAA screening requires being clear, and that it is important to include a named The short-life working group agreed the provision of contact (wherever possible) and telephone a named contact would not be feasible for NHS number, should an individual (or friend, family boards. member or carer) receiving a letter of invitation, have any questions. However, all feedback received from focus groups, and relating to patient information for the abdominal aortic aneurysm screening programme has been forwarded to NHS Health Scotland for consideration and action, as required. Standard 3 7 Should be provided in a variety of formats (for Noted - no action taken. 29 example, suitable for individuals with a learning disability (LD)) and tailored to the various aspects This is covered in standard 3a, criterion 3a.2. of the patient pathway for AAA screening (for example, on-going surveillance screening or However, all feedback received treatment). from focus groups, and relating to patient information for the abdominal aortic aneurysm screening programme has been forwarded to NHS Health Scotland for consideration and action, as required. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 30

31 Standard 3 7 Suggestion that leaflets provided with the initial Noted - no action taken. 30 invitation letter be made available at each NHS board/screening unit. The short-life working group agreed that specifying the detail of patient information is outwith the scope of these standards. However, all feedback received from focus groups, and relating to patient information for the abdominal aortic aneurysm screening programme has been forwarded to NHS Health Scotland for consideration and action, as required. Standard 3 7 There were a number of questions and concerns Noted - no action taken. 32 raised specific to AAA and the screening process itself (including pre-screening requirements), The short-life working group agreed that specifying which may be useful information to include for the the detail of patient information is outwith the scope benefit of patients. These were: of these standards. However, all feedback received from focus groups, and relating to patient AAA: information for the abdominal aortic aneurysm screening programme has been forwarded to NHS 32(a) What does AAA mean? Health Scotland for consideration and action, as 32(b) What is the cause of AAA? required. 32(c) Is the occurrence of AAA affected by smoking? AAA screening process (including pre-screening): 32(d) What do you need to do before attending for screening? 32(e) What should I wear? 32(f) Is there a consent form that requires being completed in order to undergo the screening process? Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 31

32 Standard 3 7 Agreement that information about AAA screening Noted - no action taken. 72 provided to eligible individuals (including, for example, older people and people with The short-life working group agreed that specifying dementia,) is clear and consistent, with an easy to the detail of patient information is outwith the scope understand definition of what AAA is as a condition. of these standards. However, all feedback received from focus groups, and relating to patient information for the abdominal aortic aneurysm screening programme has been forwarded to NHS Health Scotland for consideration and action, as required. Standard 3 7 Reassurance should be inherent in any Noted - no action taken. 73 documentation available to participants (and also carers and families) thereby preparing them for all This is covered in standard 3a, criterion 3a.1. eventualities, particularly so if an individual is required to undergo further treatment or However, all feedback received from focus groups surveillance screening. and relating to patient information for the abdominal aortic aneurysm screening programme has been forwarded to NHS Health Scotland for consideration and action, as required. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 32

33 Standard 3 7 It was agreed that information on the AAA Noted - no action taken. 74 screening programme be provided in a format suitable for individuals with a learning disability The short-life working group agreed that specifying (LD) which should follow current national the detail of patient information is outwith the scope guidelines used by speech and language of these standards. However, all feedback received therapists. from focus groups, and relating to patient information for the abdominal aortic aneurysm screening programme has been forwarded to NHS Health Scotland for consideration and action, as required. Standard 3 7 Suggestions were made with regard to alternative Noted - no action taken. 75 formats/formatting that could be made available/used. Namely: The short-life working group agreed that specifying the detail of patient information is outwith the scope - CD/DVD - Incorporating photographs (not a of these standards. However, all feedback received drawing) and including the building individuals from focus groups, and relating to patient (particularly those with LD) will be expected to information for the abdominal aortic aneurysm attend for screening. screening programme has been forwarded to NHS - Media such as TV or radio. Health Scotland for consideration and action, as required. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 33

34 Standard 3 7 A question was raised as to how the right Noted - no action taken. 77 information (relating to format) would be targeted to the appropriate recipients? For example, how This will be covered by standard 3b, criterion 3b.1. are individuals with LD identified, in order that they receive information suitable to them? This could also apply to individuals unable to read (of which there is a high percentage living in Scotland) and the elderly (particularly those suffering with early onset dementia). This raised a further question: how did the bowel screening programme tackle and overcome such issues? Standard 3 7 The importance of including a named contact Noted no action taken. 78 (wherever possible) and telephone number was also highlighted, thereby providing an individual The short-life working group agreed the provision of (or friend, family member or carer) who receives a a named contact would not be feasible for NHS letter of invitation an opportunity to ask questions. boards. Standard 3 7 It was noted that some individuals with LD may Noted - no action taken. 79 prefer not to travel any great distance [to attend screening], with a suggestion to include a The short-life working group agreed that specifying question and answer relating to 'Do I have to the detail of patient information is outwith the scope travel far?' as part of the patient information leaflet. of these standards. However, all feedback received from focus groups, and relating to patient information for the abdominal aortic aneurysm screening programme has been forwarded to NHS Health Scotland for consideration and action, as required. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 34

35 Standard 3 / 3a Suggested rewording for measurement 1: Actioned. 50 Demonstration of use of national communications material. The self-evaluation tool has been amended: revised wording, as suggested, has been adopted. Suggestion deletion (measurement 3): Measuring informed choice: cross-reference to criterion 1b.2. Standard 3 / 3a.2 7. Given that information resources for use within Noted - no action taken the programme will be developed by NHS Health Scotland, further information about the actions The short-life working group agreed that specifying which NHS boards/collaboratives should take to the detail of patient information is outwith the scope review information resources would be helpful. of these standards. However, all feedback received from focus groups, and relating to patient information for the abdominal aortic aneurysm screening programme has been forwarded to NHS Health Scotland for consideration and action, as required. Standard 3 / 3a.3 7. Suggested rewording for measurement 2: Actioned Patient feedback NHS boards/collaboratives. The self-evaluation tool has been amended: revised wording, as suggested, has been adopted. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 35

36 Standard 3 / 3a.4 7. We question the need for annual review - could Actioned this not be done tri-annually, unless some major change requires earlier review? The standard document and self-evaluation has been amended: reviews will be undertaken every 3 years. Standard 3 / 3b 7.2 Suggestion to move standard 3b into the Noted - no action taken. 52 screening recall section (standard 5a - participant eligibility). Following discussion, the short-life working group agreed that the current order of the standards is appropriate. Standard 3 / 3b.2 7. Suggested rewording for measurement: Actioned Demonstrate continuous professional The self-evaluation tool has been amended: development against career framework. demonstrate continuous professional development against NHSScotland's abdominal aortic aneurysm competency framework. Standard 3 / 3b.1, 3b.2, 7. Suggestion that these criteria be combined. Actioned. 53 3b.3 2 The standard document and self-evaluation tool have been amended: 3b.2 and 3b.3 have merged: 3b.1 remains. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 36

37 Standard 4 8 How will NHS boards be expected to increase Noted - no action taken. 122 uptake, as uptake is based on informed choice? The short-life working group agreed that uptake and informed choice will be optimised by the provision of appropriate information. Data from pilot screening programmes and research evidence suggests that 70% uptake is a reasonable and achievable level. Standard 4 / 4a.2 8. It was suggested this be highlighted as an Noted - no action taken access point available to individuals, particularly where AAA as a genetically-linked condition is The marketing of the AAA screening programme, known. including the self-referral protocol, is outwith the remit of the short-life working group. The criterion in the final document is now 5a.2. Standard 4 / 4a.2 8. A question was raised as to the possibility of Noted - no action taken individuals being able to undertake a self-check, subsequently leading on to self-referral if The short-life working group agreed that specifying appropriate? the detail of patient information is outwith the scope of these standards. However, all feedback received from focus groups, and relating to patient information for the abdominal aortic aneurysm screening programme has been forwarded to NHS Health Scotland for consideration and action, as required. Consultation on the draft clinical standards for abdominal aortic aneurysm screening programme Page 37