FUTURE OF INVITRO-FERTILISATION (IVF) AND MARGINALISED VULNERABLE ADULT SERVICES

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Agenda Item No. 07 Reference No. IESCCG 16-49 Date. 27 September 2016 From: Ed Garratt, Chief Officer FUTURE OF INVITRO-FERTILISATION (IVF) AND MARGINALISED VULNERABLE ADULT SERVICES 1. Purpose 1.1 To decide on the following proposals to support financial savings, paying due regard to the public s views: i. to offer either no cycles or one cycle of fertility treatment for women; ii. to better focus the support for people in the Ipswich area with complex health, housing and social needs, and stop the service in the west of the county. 2. Background 1.1 Ipswich and East Suffolk CCG is responsible for commissioning core healthcare services for people in the area. It has worked with its sister CCG, West Suffolk, since 2013 to improve quality and make changes to services to realise cost benefits. In July of this financial year the CCGs highlighted that, although not currently in debt, 13 million of combined cost efficiencies needed to be made. The CCGs needed to make changes as they do not have enough money to continue delivering all the local healthcare services in the way they do now. 1.2 In the past 3 years, the CCG has made savings within its budgets to meet its financial obligations, in part by using non-recurrent funds. The CCG does not have non-recurrent funds available in 2016/17 to use to help to balance its financial position, and has the largest financial efficiency challenge to date. 1.3 The CCG s financial forecast for 2017-19 will be clearer once the contracting round has concluded in December 2016. However, the CCG expects its allocation growth to reduce significantly from April 2017. 1.4 To help address financial problems both now and for the future, twin processes were launched. The first has seen the CCG look at every single contract with each of the 150 providers. In particular it has reduced spend on its own management costs by over 1m. The second was to propose to the public that changes were made to two of its services, as set out in 1.1, and pay due regard to those views in decision-making. (See the attached engagement document for fuller details). Page 1 of 6

2. Summary of Patient and Public Engagement A proposal document was prepared and launched on 19 July with a clear process set out within it. A thorough engagement process was carried out including a total of 22 events from 19 July to 9 September. Health Scrutiny Committee members, Health and Wellbeing Board members and Healthwatch Suffolk were engaged. Fifty staff took part, with help from GPs, lay members from both CCGs, a volunteer and five members of Healthwatch Suffolk staff. 235 Facebook posts were issued, resulting in 38,360 impressions. On Twitter there were 228 posts with a 15,152 engagement rate. Four press releases were issued which saw: two TV interviews; three BBC Radio Suffolk interviews; one Ipswich Town Radio interview; 11 press articles. 580 comments were gathered on outreach service proposals and 794 on in-vitro fertilisation. On the street and website, people clearly understood the proposal to change in-vitro fertilisation. There was less understanding of the offer for outreach clinics for homeless and other vulnerable people. More information was needed to gain greater insights into the patient experience. Therefore focus groups and outreach clinic visits were carried out to find out more. MPs, councillors and support groups wrote in answer to both of the proposals. Frequently asked questions have been answered through the process, and answers will have been published online. An independent assessment has been prepared by the University of East Anglia. 3. Engagement themes for in-vitro fertilisation 3.1 What we are engaging about; Two options were presented during the engagement exercise; Option Definition Risks/benefits Savings Option 1 Reduce to one cycle One fresh cycle and two frozen embryo transfers Risks Full costs are not realised and other services may need to be reduced as a result 345,000 Option 2 Zero cycles In line with Exceptional Funding Policy, those rendered infertile through cancer or other major treatments would apply for IVF Benefits Those against the proposal would feel their thoughts had been heard. Money can be released to spend on core services. Risks People who are facing infertility could suffer depression and anxiety from being unable to conceive. Benefits Full costs realised. 690,000 3.2 Of the respondents, there were three significant opinions: people/individuals who felt that it was fairer to offer one cycle; another group against the option to reduce at all; with the remaining respondents feeling that zero cycles should be offered.

3.3 During the engagement; the key discussion points/themes raised by members of the public and patients included; - Mental health concerns and impact on family - Funding, particularly that money could be better spent elsewhere in the NHS or suggesting means testing or why should people have to fund IVF treatment themselves - Improved information - Adoption as an alternative to IVF 3.3 People who had personal experience of IVF treatment were also divided in their opinions, but mostly felt that cycles should be offered on the NHS. 3.4 A few comments have been drawn out here: In reality most people have no understanding of how devastating it can be unless they have experienced it. It is an intensely private issue that is difficult to talk about publicly and is therefore goes largely unrecognised. I don t think it's something the NHS should fund. The savings could be spent better elsewhere. One cycle should be offered. I don't think it's fair not to offer at least that. However, some people could raise the money themselves. 3.5 Fertility Fairness wrote specifically to point out that this was a departure from the NICE guidance, and if carried out, would raise questions of equality and increased costs to the NHS caused by multiple births when people seek support abroad. 4 Engagement themes for marginalised and vulnerable adults (MVA) 4.1 What we are engaging about; Options Definition Risks/benefits West East Option 1 Cost No change 319,000 Outreach services based in east and west Risks No savings realised and other services may need to be reduced as a result Mental health and DAAT need improvement Partners report higher complexity and increased activity Cost 480,000 Option 2 Decommission services fully No service at all Benefits Action can be taken to improve MDT working at strategic level and on the ground level. Risks 1374 patients p/a will not be identified and signposted which could lead to rise in costs for A&E, admission and DToCs. Actual impact is unquantifiable. Extra pressure on partners Fear of authority means they will not visit GPs at all Savings 319,000 Savings 480,000

Without face to face intervention, clients are unable to make choices to improve their health Benefits Savings realised and other services may not need to be reduced Option 3 West and East provide a reduced consolidated offer on either both or one of the CCGs areas Health outreach clinics would continue to support most deprived areas Risks Some patients will not be identified (as above) and some may choose not the travel to the hubs MVA clients migrate to Ipswich, placing greater pressure on public services there Benefits Some savings delivered (level TBC). Enables improved cross public sector working at strategic and on the ground levels. Opportunity to feed into service specification to ensure the service better meets the needs of the client group. Cost TBC Cost TBC 4.2 The background for consolidating this service is that the vast majority of marginalised and vulnerable adults are located in the Ipswich and east Suffolk area, with more limited demand for the MVA service in west Suffolk. 4.3 This service began in 1997 in Ipswich, and, at that time there was a link to the Refugee Council which then had its base there. In 2007, it was transformed to focus on the most disadvantaged groups in line with national guidance. This has developed into outreach services in Ipswich, Felixstowe, Leiston and Stowmarket. In 2012, the service was made into a county-wide service to focus on disadvantaged areas. Over four years the service developed outreach services in Sudbury, Haverhill, Newmarket and Bury St Edmunds. The contract is due to be re-procured for July 2017. 4.4 The views of the public were polarised. Views from partners, service users and those who best understood the service showed areas of need for the most vulnerable in society. 4.5 Themes included: - Access to primary care was difficult in general, and particularly for this group - Mental health and drug and alcohol services were key for this group - Joint working with partners, such as housing, social services, voluntary and public health - Transport problems from rural areas to urban areas, such as how will people in the west get to Ipswich?

- Appropriate use of funding, such as why do the NHS pay for MVA. 4.6 Some comments collected are recorded below: I agree that services should be better focused in the Ipswich area. I also agree that if the user numbers are low in the west then the service should be cut but it is important that some of these savings are reinvested into other existing services that support those in need. comment made on the street. Has been known to the outreach service for a long time. Has been seen by the service across the county in Haverhill, Bury, Ipswich and Felixstowe. Has had support for drug, alcohol, mental health, GP and hospital appointments, ex-offender issues and housing problems. Pt couldn t remember where he initially came into contact with the service. from outreach clinic It would have taken me longer to get to where I am now and where I want to be. I am reluctant to visit my GP. My anxiety and depression makes it difficult to get out on bad days. Ipswich has bad memories so I wouldn t want to go there for treatment. from outreach clinic In an ideal world strategic leaders would encourage cross public sector working and put aside a pot of money to make this happen. The MVA service holds on to people as it doesn t trust others to do their jobs comment made at focus group. 5 Recommendation 5.1 Members are asked to pay due regard to the feedback given by the public to make a decision on the options in 3.1 and 4.1. Author: Isabel Cockayne, Head of Communications

Appendix A According to Fertility Fairness, 80% of CCGs do not commission the recommended three full cycles of IVF. CCG Cycles Definition Age range BMI Cambridgeshire & 2 4 embryo transfers with two F 23-40, 40-42, F: 19-30, M: <35 Peterborough fresh cycles M <55 IESCCG 2 4 embryo transfers with two F 23-40, 40-42, F: 19-30, M: <35 fresh cycles M <55 WSCCG 2 4 embryo transfers with two F 23-40, 40-42, F: 19-30, M: <35 fresh cycles M <55 NEECCG 0 Only available for people with n/a n/a cancer treatment Mid Essex 0 Only available for people with n/a n/a cancer treatment West Essex 2 Unknown F: <40, 40-42 F: 19-30, M: <35 Castlepoint and 2 Unclear F: <40, 40-42 F: 19-30, M: <35 Rochford Southend 2 6 embryo transfers with two F: <40, 40-42 F: 19-30, M: <35 fresh cycles GYWCCG 3 One fresh cycle and all viable transfers F 23-40, <42 F: 19-30, M: <35

Proposed changes to healthcare in east and west Suffolk - give us your views Public engagement by: NHS Ipswich and East Suffolk Clinical Commissioning Group and NHS West Suffolk Clinical Commissioning Group 19 July - 9 September 2016 www.ipswichandeastsuffolkccg.nhs.uk www.westsuffolkccg.nhs.uk

Introduction Nationally the NHS is facing a challenging future, as demand for services continues to increase. An expanding and ageing population and more people living with long term health conditions are placing further pressure on already overstretched services and finances. The NHS in east and west Suffolk has managed significant financial challenges since 2013, funding new ways of working to manage demand. We have now reached a point where there is not enough money locally to continue delivering all the services in the way it does now. It is important the clinical commissioning groups (CCGs) are honest and open about this financial situation. The CCGs are currently not in debt, but over the coming year they are at serious risk of spending more money than they have. We have to find 13 million collectively or risk going into a serious financial shortfall. We want to get your views on initial proposals for making some of the savings efficiencies needed. The results will be independently assessed before any decisions are made. The clinicians, who run the CCG along with managers, have had to think really hard about how and where they can reduce their spending. The governing bodies chose these proposals very carefully. They are not made lightly and we understand that these are hugely emotive subjects. It is important to get your views on what this means to you and the impact any changes might have on your life. As well as these proposals on the following pages, we continue to work towards simpler, more joined up services across health and social care - sometimes known as integrated care. No change is not an option. We have to make changes to protect the core NHS services and ensure that the safety and quality of those services remains high. Please take some time to read through this important information. At the end of this document we outline the ways you are able to submit your views and feedback. Dr Christopher Browning, Chairman, NHS West Suffolk Clinical Commissioning Group Dr Mark Shenton, Chairman, NHS Ipswich and East Suffolk Clinical Commissioning Group 2

Who are the clinical commissioning groups? Clinical commissioning groups are responsible for buying-in (commissioning) and monitoring most healthcare services for their local population. Across England there are 211 clinical commissioning groups and they are clinically-led by GPs and other health professionals. In Suffolk there are three clinical commissioning groups. This document and its proposals refer to only two of these groups. These two groups are NHS Ipswich and East Suffolk Clinical Commissioning Group, which serves a population of around 385,000 and NHS West Suffolk Clinical Commissioning Group, which serves a population of around 235,000. The Waveney area of Suffolk is served by NHS Great Yarmouth and Waveney Clinical Commissioning Group and is not included in this engagement. The CCGs aim to get the best possible health outcomes for local people by assessing local needs and, in partnership with local people, decide on what the health priorities are and what services should be commissioned. The CCGs then buy those services from hospitals, mental health providers and community health organisations. Examples of the services bought by IESCCG and WSCCG include the emergency department services (A&E) at Ipswich and West Suffolk hospitals, the NHS 111 telephone advice line and mental health support provision. In total, the IESCCG and WSCCG commission over 150 organisations to provide services. Throughout this document NHS Ipswich and East Suffolk Clinical Commissioning Group will be referred to as IESCCG and NHS West Suffolk Clinical Commissioning Group will be referred to as WSCCG. CCGs will refer to both clinical commissioning groups. 3

What s this all about? The amount of money allocated to each CCG is decided by the Department of Health. It is based on the size of population and local health needs. Although neither CCG is currently in debt, the CCGs are predicting a serious financial shortfall. The CCGs have to take action to address this serious financial situation so that they only spend their budget. The CCGs do not have enough money to pay for all the services currently commissioned. There are some core services they are required to deliver, such as emergency care, elective hospital care, maternity services, and community and mental health services, which will remain the same. However there are some which have developed over time. IESCCG has an annual budget of 467 million and over the coming year has to make cost savings efficiencies of 17 million. WE STILL HAVE TO IDENTIFY 8 MILLION OF SAVINGS. WSCCG has an annual budget of 298 million and over the coming year has to make cost savings efficiencies of 14 million. WE STILL HAVE TO IDENTIFY 5 MILLION OF SAVINGS. The CCGs have proposed two areas where changes could happen which go a little way to make the savings needed to balance the books for the future. Reducing cycles of fertility treatment Focusing the service for marginalised and vulnerable adults where it is most needed We want to know your thoughts on these proposals - What do you think? How might these changes affect you or your family? How could we limit the effects of these changes? Could we do things differently? No decisions have been made. Over the next eight weeks (19 July - 9 September) the CCGs will be engaging with local people in order to explain the financial position, the reasons for making these proposals and outlining how people might be affected. This whole process will be open and transparent and independent assessors will be asked to write a report on all the information which is gathered over this period. This report will be made public and the final decisions will be made when the governing bodies of the CCGs meet in September 2016. 4

How the CCGs spend NHS money IESCCG WSCCG IESCCG Diss Stowmarket Woodbridge Hadleigh Ipswich Harwich Felixstowe IESCCG Annual budget 467 million Population c. 385,000 Hospital care 45.9% Mental health 13.8% GP prescribing 11.2% Community 9.2% Continuing care 4.7% Ambulance and urgent care 3.5% All other 11.7% 5

How the CCGs spend NHS money WSCCG WSCCG IESCCG Brandon FOREST HEATH Mildenhall Bury St Edmunds Newmarket ST EDMUNDSBURY BABERGH Haverhill Sudbury Hospital care 51.0% WSCCG Mental health 13.1% Annual budget 298 million GP prescribing 11.5% Community 8.7% Population c. 235,000 Continuing care 3.7% Ambulance and urgent care 3.2% All other 8.8% 6

What we ve done already to address the situation There s nothing new about the NHS being under financial pressure. That s why both CCGs have been working really hard to make the NHS pound go further while maintaining the safe, high quality services being delivered to patients. It s important to remember that NHS services in Suffolk have a good reputation for quality and safety. NHS staff are doing a really good job in supporting people to live healthy and happy lives. Suffolk has some of the best clinical outcomes in the country, such as in stroke and cancer, and has in general high performing services. Examples of innovation include: Crisis Action Team - Adults experiencing a crisis situation are given the support they need to remain in their own home or be rapidly discharged from A&E. This is a much better situation for patients and saves on expensive hospital admissions. Community Diabetes Service - Providing support to Type 2 diabetes patients and their families so they are in better control of their condition and reduce the need for primary and secondary interventions. Partnership Working - Better working together is an integral part of future planning. We have worked hard to forge stronger links between health and social care teams, to make sure people don t slip through the net and ensure better use of resources. CCG Staff - There are 235 staff employed by the CCGs, working in sectors including IT, contracts, finance and HR. The CCGs are run as efficiently as possible and staff costs are amongst the lowest in the country at 1.6% of the budget. A recruitment freeze has been introduced for all but the most critically essential roles. 7

Proposal 1 What s the proposal? Since 2014 the CCGs have funded up to two cycles of IVF treatment for women aged up to 40 and one cycle of treatment for women aged 40-42. We are proposing that IVF services would be reduced to one cycle only, being made available to patients who meet the eligibility criteria OR that IVF services would be reduced to no cycles for all couples (restrictions apply and couples can apply for individual funding for clinical reasons). What is IVF? Reducing cycles of fertility treatment IVF (In Vitro Fertilisation) is a fertility treatment where an egg is fertilised by sperm outside of the body. A woman s ovaries are stimulated to produce eggs which are then fertilised in a special environment outside the body. The fertilised egg is then transferred to a women s uterus with the intention of establishing a successful pregnancy. Who will be affected? This proposal would affect new patients who are experiencing difficulty in conceiving and who would currently quality for IVF treatment. Who will remain unaffected? All of the diagnostic services which are carried out before IVF are unaffected as they are not within the scope of this consultation. Additionally it will not affect: Those who have already commenced IVF treatment will have their care continued as advised at the start of the course of their treatment. Patients undergoing cancer treatments or who have a disease or condition requiring medical or surgical treatment that has a significant likelihood of making them infertile. Couples in which the male partner has a chronic viral infection that could be transmitted to the female partners and potentially any unborn child. Patients with eggs, sperm or embryos currently in storage. These will continue to be stored under the conditions they were originally stored and in line with HFEA guidance. Those people who are paying for their own services. How many people might this proposal affect? About 90 couples had cycles of IVF in the last financial year. How much money would be saved? 345,000 for offering one cycle 690,000 for offering no cycles Summary We recognise that these services are hugely important for those people affected by fertility issues. Under our plans, we propose that the current IVF service provision would be restricted as it does not provide sufficient benefit to the overall health economy. We also recognise that this proposal is contrary to national guidance set by the National Institute of Clinical Excellence (NICE). NICE guidance suggests women aged up to 40 years who have not conceived after two years should be offered up to three full cycles of IVF. The guidance suggests women aged between 40 and 42 who meet certain criteria should be offered up to one cycle of IVF. NICE provides guidance only and it is up to individual CCGs to implement their own policies which best reflect the needs of the local population. Other CCGs in the country, including neighbouring CCGs, have taken the decision to reduce IVF to only those people living with specific medical conditions. IESCCG and WSCCG believe that one of these proposals - either one full cycle being made available to all eligible patients or no cycles - will help support work to address the CCGs financial position over time. See page 10 on how you can give your views on this proposal. 8

Proposal 2 Focusing the service for marginalised and vulnerable adults where it is most needed What s the proposal? The Suffolk Marginalised and Vulnerable Adults Outreach Service (MVA) is currently commissioned by IESCCG and WSCCG. This proposal would better focus the support for people in the Ipswich area with complex health, housing and social needs, and stop the service in the west of the county. We would find ways to improve advocacy and signposting in west. What is the MVA service? The MVA service provides health services to people who are not registered with a GP or, if they are, might need more assistance through advice or signposting to other services or voluntary organisations. The contract is up for renewal in January 2017. The service is focused on supporting homeless people, refugees and asylum seekers, Gypsies, Travellers and Roma people and ex-offenders. This is mainly a nonclinical signposting service. MVA is largely delivered through drop-in clinics and helps those people access the right healthcare service for their needs. The main aims of the service are to improve access to GP services and ensure the most appropriate use of NHS services. The service also provides a first response to immediate needs such as wound care, health checks, sexual health advice, drug and alcohol services, needle exchange and prescribing. The service is currently mostly focused on the Ipswich area, which have the highest concentration of marginalised and vulnerable adults, with drop-clinics also provided in the west of the county. During 2015/16 there were 1,958 referrals received county-wide and around 1,374* patients were supported. We plan to focus the services, specifically in Ipswich, where the demand from clients is higher and where there is greater need. The CCGs recognise that there are other services commissioned by partners, such as Suffolk County Council, which also support marginalised and vulnerable adults. Through this process, the CCGs will be working with partners to see how these other services can also work better to meet the needs of this client group. Who will be affected? Anyone in the above-mentioned groups who would or could access the MVA clinics in west Suffolk after January 2017, when it is proposed the service would stop being provided. Who will be unaffected? The service in this area will be focused predominately in Ipswich, bringing together partners to better join up the services for those people with complex needs in health, social care and housing. How many people might this proposal affect? It is estimated about 300* clients in the west of the county might be adversely affected each year. How much money would be saved? 369,000 across both CCGs Summary Both CCGs are committed to ensuring fair access to health services, and the MVA service forms part of that commitment. However, the population mix of east and west Suffolk means that the vast majority of marginalised and vulnerable adults are located in the Ipswich and east Suffolk area, with more limited demand for the MVA service in west Suffolk. This proposal would ensure that MVA services are still delivered in the areas where demand is at its highest. There may be a need to find other ways to identify and support individuals who are marginalised or vulnerable. *On 20 July, the service provider kindly updated these two figures based on information they hold. See page 11 on how you can give your views on this proposal. 9

Feedback Form Your views count - have your say Your views are very important and will be taken into account. Tell us what you think of the proposals: Online: The easiest way to give us your views is by completing the online feedback form at: www.ipswichandeastsuffolkccg. nhs.uk/feedback www.westsuffolkccg.nhs.uk/ get-involved-6/engagement/ Please share your views on the proposals contained within this document by answering the following questions. Your views are important and will be used and will play an important part in the overall decisionmaking process. No decisions will be made until all responses have been independently assessed and published. You can complete this form online or return it by post to the above address. All responses must be received by 5 p.m. on 9 September 2016. All responses will be treated confidentially. 1. What comments do you have about Proposal 1? EITHER that IVF services would be reduced to one cycle only, being made available to patients who meet the eligibility criteria OR that IVF services would be reduced to no cycles for all couples (restrictions apply and couples can apply for individual funding for clinical reasons). Email: comms@suffolk.nhs.uk Write to us at: Engagement Team, NHS West Suffolk CCG / NHS Ipswich & East Suffolk CCG, Rushbrook House, Paper Mill Lane, Bramford, Ipswich, IP8 4DE Telephone: 01473 770014 Twitter and Facebook: @IESCCG /NHSIpswichandEastSuffolkCCG @NHSWSCCG /nhswsccg 10

2. What comments do you have about Proposal 2? To better focus the support for people in the Ipswich area with complex health, housing and social needs, and stop the service in the west of the county. We would find ways to improve advocacy and signposting in west. 3. Do you have any other comments about these proposals? 11

4. Do you have any views or ideas on how the CCGs could improve their financial situation? 5. What postcode do you live at? (We need this to understand the data better.) 12

To engage as broadly as possible with members of the public and those interested parties, we will be doing several things: 1. We will be going out into market towns and events across Suffolk (listed below). 2. We have already identified several community members and representative groups and will work with Healthwatch Suffolk to find others. We will invite those groups to focus groups in Ipswich, Bury St Edmunds and Haverhill. We will also offer to visit groups meeting during the eight weeks. 3. We will be using electronic forms on our websites to gather views on the proposals and this printed document. Friday 22 July: Town Centre - Leiston 11am-2pm Saturday 23 July: Felixstowe Carnival - Felixstowe 11am-2pm Wednesday 27 July: Cornhill and Buttermarket - Bury St Edmunds 11am-2pm Tuesday 2 August: Cornhill - Ipswich 11am-2pm Thursday 4 August: Buttermarket - Stowmarket 11am-2pm Friday 12 August: Market Square - Haverhill 11am-2pm Wednesday August 17: Eye Hospital - Eye 11am-2pm Saturday 20 August: Market Square - Newmarket 11am-2pm Thursday 25 August: Market Square - Sudbury 11am-2pm Tuesday 30 August: Multiple central sites around Ipswich & east Suffolk area including Norwich Road, Stoke Park and Adastral Park - Ipswich, Capel St Mary, Hadleigh, Woodbridge, Framlingham. Friday September 2: Mildenhall Market Square - Mildenhall 11am-2pm Wednesday 7 September: Cornhill and Buttermarket - Bury St Edmunds 11am-2pm Equality Monitoring We ask these questions to make sure we get the views of a wide range of people. Please answer as many questions as you feel comfortable with, or leave blank. Are you: (please tick box) Male Female Non Binary Which age group are you? <16 16-19 20-24 25-34 35-44 45-54 55-64 65+ Do you consider yourself to be disabled? Yes No Would you describe your ethnic group as: (please tick, or leave blank if you prefer not to say) A: White British Irish Gypsy & Traveller Other white B: Mixed or multiple ethnic groups White and Black Caribbean White and Black African White and Asian Other mixed C: Asian or Asian British Indian Pakistani Bangladeshi Chinese Other Asian D: Black, African, Caribbean or black British Caribbean African Other black E: Other ethnic group F. Prefer not to say Return this form to: The Engagement Team, Rushbrook House, Paper Mill Lane, Bramford, Ipswich, Suffolk, IP8 4DE. CLOSING DATE FOR FEEDBACK: 5 p.m. on 9 September 2016 13

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