Better Care Together TNS BMRB research programme

1. Better Care TogetherTNS BMRB research programme Overview of better care together engagement March 2013 to date June 2014

2. What is better care together? Better care, together is a review of local health services which is being carried out by local NHS organisations, led by: • Lancashire North Clinical Commissioning Group • Cumbria Clinical Commissioning Group • University Hospitals of Morecambe Bay NHS Foundation Trust, which runs the hospitals in Lancaster, Barrow and Kendal. The review is an opportunity to make sure the best possible health services are provided across North Lancashire and South Cumbria, which meet the needs of residents, now and well into the future. Health professionals in the area, including GPs, hospital doctors, voluntary organisations and other NHS and social care colleagues are considering how the different parts of the health service can work together more effectively to ensure individual patients get the most appropriate care.

3. IntroductionBetter care together is conducting a large-scale programme of public engagement to inform the new clinical strategy. The work to date has been a combination of engagement carried out by better care together and work commissioned externally. The purpose of the engagement to date is to act as a pre-consultation stage of engagement to inform plans to reconfigure health services across Morecambe Bay. • Collecting public and stakeholder opinion on health services provided in the Morecambe Bay area and gathering information on their specific experiences and priorities for future service delivery. • Engagement in Spring and Summer 2013 focused on opinion re: four work stream areas: maternity, paediatrics (children and young peoples services), planned and unplanned acute services. • Engagement from Autumn 2013 to date focused on opinion on out of hospital services in terms of current provision and future provision following feedback from patient, public and stakeholders that better integration was needed between in and out of hospital services, and enthusiasm to discuss how out of hospital services could be improved • Research is being undertaken in North Lancashire, South Lakeland and Barrow-in-Furness to reflect the spread of the population across the region served by NHS Cumbria Clinical Commissioning Group, Lancashire North Clinical Commissioning Group and the University Hospitals of Morecambe Bay NHS Foundation Trust. • This presentation summarises the findings from the engagement research to date Approach

4. Summary of better care together engagement to date:

5. Promoting the engagement opportunities The engagement opportunities to date were promoted via a number of channels including: • Street recruitment for TNS BMRB focus groups and discussion events • Press releases to local media re: activities • Newspaper advertorials re: bus roadshow • Radio interview re: bus roadshow • Website • Posters promoting the paper survey • A4 4 page leaflets distribution at the bus roadshow and at the public field events • Stakeholder briefings • Paper survey placed in public locations e.g. GP surgeries, pharmacies, libraries etc. • NHS staff communications • Word of mouth • Direct contact e.g. invitations, email and telephone • Newspaper advertising e.g. re: Spring 2013 and 2014 events • Ad-bike

6. Externally commissioned engagement

7. Results of the TNS BMRB 2013 Engagement Programme: Participant feedback

8. MethodologyIn Spring 2013 better care together commissioned TNS BMRB (an independent specialist in research) to carry out a research programme for Better Care Together. The programme involved four phases of engagement followed by analysis and reporting. Quantitative phase:surveys to access the opinions of a much larger number of respondents, to help identify on a larger scale which emerging issues had greatest significance. • Public postal survey (targeted): Questionnaire posted to 10,000 randomly selected households • Public open access survey: Questionnaires distributed (c.10,000) to locations such as GPs and pharmacies, questionnaires could also be requested by members of the general public • Staff/ stakeholders: Web survey (invited) • Approx. 3700 responses • Deliberative phase: interactive workshop sessions with service users, to explore future service delivery options in depth • 6 deliberative workshops with 20 service users in each Scoping phase: listening to internal stakeholders (with a geographical spread) to hear, first-hand, their views of the current state of play and ideas on what service changes might look like • 16 interviews with senior or specialist staff/stakeholders • 4 small groups of staff/stakeholders Create Include Qualitative exploratory phase: focus groups and one-to-one discussions exploring experiences of services, concerns, preferences and priorities for future service delivery • 24 90-minute groups with service users and relatives • 30 60-minute interviewswith people with negative experiences of health services • 20 60-minute in-depth with a range of stakeholders • Online community with 30 young people • ‘Street interviewing’ with 33 members of the public Explore Listen

9. Geographical areas: summary of people, outlooks and attitudes (TNS BMRB 2013) Barrow in Furness • Relatively well connected to other places by M6. Divided population – Morecambe, Carnforth etc feels separate from Lancaster. Generally look south to Lancashire rather than north to Cumbria. Expectation of access to ‘big city services’ in Lancaster (not always realised). • Hard to access rather than isolated. Mixed population in terms of income, options and residency – some much more able to deal with access, and much more outward looking, than others. Accustomed to travelling to access healthcare services. South Lakes • Geographically isolated – a ‘cul-de-sac’ (respondents’ phrase) in terms of location and outlook. Relatively deprived. Many long-term residents; many seldom travel beyond the local area. Easy access to, and ‘pride of ownership’ of, a DGH is a strong influence on views. North Lancs.

10. Better care together initially concentrated their efforts on four workstream areas: this is a summary of key views and priorities (TNS BMRB 2013) 4. Unscheduled Care 1. Maternity 2. Paediatrics 3. Planned Care Proximity the most important factor. Most content with, and see benefits of, the services they have accessed. Most see downsides to alternative service options. Parents prepared to travel further for expert care for their children than in other service areas, but less willing to travel for routine care. More sensitive to delays and quality of staff approach. Widespread contentment with medical care received locally (assumption that it will be at least adequate). Willing to travel for specialist care. Most issues regard communication and administration. Proximity and speed of first assessment is key. Alternatives to A&E are welcomed (where they exist, and as an idea) if they aid this, particularly for minor injuries.

11. Maternity services (TNS BMRB 2013)

12. Maternity services were rated positively on the whole(TNS BMRB 2013)The most important factors influencing a positive or negative experiencewere the availability and attitude of staff Those who had a comment about their experience said... SOURCE : General public survey

13. The importance of choice of place of birth (TNS BMRB 2013) • 84%of targeted respondents (who were pregnant/had a pregnant partner) said it is important that they are able to decide in which hospital or location the child is delivered • The Explore phase of research demonstrated this has little to do with the ‘identity’ of the child being born in a particular area, and much more to do with proximity to home and safety 70% of the people who answered ‘Don’t know’ were men %

14. General views on future changes to services (TNS BMRB 2013)Views of options around antenatal care and delivery were very strongly informed by experience of and access to current services, and beliefs about what is needed Preference for CLU, MLU or home birth • Drivers: Services; Experience; Expectations • Overall: Experience is less prominent than the other drivers: people reluctant to change what had worked in the past, tend to see benefits of the care they received and disadvantages of other options, even if their experience was less than ideal. • Barrow and N Lancs: Expect and draw comfort from presence of consultants, despite negative experiences; see only risks to MLU, not potential benefits • S Lakes: All three drivers align to create strong preferences for MLU; some reluctance to use CLU even if advised to do so Choice of place of birth and when this would change • Drivers: Services; Relationships; Horizons; Expectations • Overall: Proximity to home and perceptions of safety are key considerations: being close to family; minimising need to travel prior to delivery and risk of transfer during labour • Barrow and N Lancs: hard to imagine going anywhere except FGH or RLI – close to home and expected to be able to handle complications • S Lakes: preferred to deliver at Helme Chase, but accept assessments that identify risks and advise going elsewhere

15. Reactions to potential service configurations of co-located Consultant Led Units (CLU) and Midwife Led Units (MLU) vs stand-alone MLU (TNS BMRB 2013) Items for further consideration: • For Kendal, a concern that a co-located MLU in Lancaster would encourage more risk-averse Kendal mothers to go there, eventually leading to Helme-Chase closure • Kendal would prefer ‘MLU-plus’ at WGH, where midwives are trained to use forceps etc to avoid transfer for ‘minor interventions’ • Barrow wondered about benefits of locating free-standing MLUs to ‘fill in the gaps’ between CLUs and service a greater breadth of areas. Ultimately ruled out due to practical issues (cost, new inexperienced services) and in favour of locating in areas of highest birth rate Why would co-locate CLUs and MLUs? • Satisfies a fear of transfer felt in Barrow and Lancaster • CLUs can be reserved for complex cases • Provides ‘risk-free’ choice of MLU and CLU; may encourage more people to try MLU • Additional free-standing MLUs not seen as practical (cost); unclear where the MLUs would go Why CLUs in Lancaster and Barrow? • No-one loses existing services • Highest birth rates • Kendal do not want a co-located CLU (concern that it would ruin the MLU experience) • Barrow think Lancaster too far to travel/transfer – bad road, traffic, unsafe • Lancaster very resistant to travelling to Preston Preference: co-location of MLUs and CLUs in Barrow and Lancaster, keep MLU in Kendal

16. Paediatrics (TNS BMRB 2013)

17. Paediatric services generally rated positively (TNS BMRB 2013)Only a minority (one in ten)rated the services as poor or very poor, with poor experiences most often being attributed to long waiting times 74% 13% % Those who had a comment about their experience said... SOURCE : General public survey

18. General views on future changes to services (TNS BMRB 2013)Acceptability of alternatives to A&E and personal contact with health professionals depends on existing access to and confidence in these services Using the GP rather than A&E for urgent care • Drivers: Services; Relationships; Capabilities; Experience • Overall: Difficulties in getting appointments and lack of perceived ‘value’ from GPs were barriers in all areas. Mitigated for some who knew how to use the system. Ease of access to A&E was also a factor. • Barrow: Scepticism about ability to get urgent appointments at GP and proximity of FGH made many feel it is ‘acceptable’ to bypass primary care and go straight to A&E. Positive experiences at FGH amplified this. • S Lakes: Depends on short-notice availability of GPs, but also since Westmorland is limited and RLI A&E is distant many reluctant to waste time if need to go to RLI in the end (despite some negative experiences at A&E). • N Lancs: Parents want to make their own assessment of whether A&E is necessary, and likely to err towards it given access to GPs. 111 service helps with this. Mixed experience of being referred to A&E has a strong influence. Specialist care and other services via video links etc • Drivers: Services; Relationships; Experience • Overall: Ensuring the child gets to know relevant professionals was a key consideration; provided this is covered, remote contact is appreciated. 111 service shows some that it can work. Most appropriate for primary and follow-up care. Least popular in Barrow and Lancaster, due to proximity of DGHs.

19. Reactions to potential service configurations of Enhanced Community Nursing (ECN) and Short Stay Paediatric Assessment Units (SSPAU) vs retaining current inpatient services (TNS BMRB 2013) Items for further consideration: • Parents uncomfortable with taking responsibility for diagnosis decisions, therefore transportation for “in distress” or at-home care may provide reassurance: • Enhanced Primary Care services could help meet a diagnosis need and may make SSPAU more appealing to service users • Clarity that parents would not be responsible for transportation in case of transfer • Provide reassurance of sufficient numbers of paediatric nurses & in-hospital training • Families are eager to avoid A&E and its long-waiting times: • SSPAU would be more appealing if it clearly helped avoid A&E (i.e. more direct access) • A phoneline into the SSPAU also welcomed for advice Why keep inpatient service? • Parents are loss and risk averse: strong emotional desire to retain access to inpatient paediatric care for all but the most serious cases nearby • Concern about risks to child & parental responsibility during transfer • SSPAU a positive addition but benefitsnot sufficiently clear to warrant loss of inpatient • Community nursing support insufficient Why keep in Lancaster and Barrow? • No-one loses existing services • Both areas extremely opposedto loss of inpatient services; Kendal supports a case for service in Barrow in particular given isolation Preference: Co-location of SSPAUs alongside inpatient wards in Barrow and Lancaster, with enhanced 24h paediatric service in Kendal. Maintain status quo if this is not an option; closure of any inpatient service is strongly rejected.

20. Planned care (TNS BMRB 2013)

21. Those with a recent experience rated planned care more positively.Most important factors were waiting times, quality of care and communication (TNS BMRB 2013) 15% 71% % Those who had a comment about their experience said...

22. General views on future changes to services (TNS BMRB 2013)All prioritised efficient referrals to specialists, with explanations for decisions. Acceptability of local solutions for episodic care depends on the post-treatment care pathway. Local service delivery for chronic conditions is widely supported Desired improvements • Overall: Speedier access to assessments and diagnoses (GP referrals). Consultants and GPs being more prepared to give explanations of all decisions. Continuity of staff, and making patients aware if continuity can be requested. • N Lancs: residents called for better/ speedier access through GPs and management of discharge • Barrow: residents wanted staff to show more ‘care’, to be clear on decisions and outcomes • S Lakes: residents asked for more patient transport for appointments and better communication between GPs, Westmorland and other hospitals Solutions • Episodic care: Acceptability of elective day surgery with earlier discharge depended on the condition and advice from specialists, and on improvements to care post-discharge, with a stronger link between specialist and local care (GP/ district nurse). There was interest in ‘intensive’ treatments to reduce total number of appointments – many prepared to travel further if this was possible. • On-going care / chronic conditions: Interest in local solutions: mobile specialist clinics, strong support for ‘district nurse’ role (return to older models), greater use of pharmacies – already believed to be in place in some cases. Continuity of care prioritised in all three areas. • Stakeholders: More can be done with planned care through teleconference in rural areas. N. Cumbria has had success with a stroke teleconference between 16 hospitals and consultants in north-west.

23. Reactions to potential service configurations: Ambulatory Care Centres (ACCs) and Day Case Surgery (DCS) vs retaining inpatient services (TNS BMRB 2013) Items for further consideration: • Some debate about whether ACCs should be: • numerous and based in the community because they will serve older populations on an ongoing basis • fewer in number, and centrally located to serve a larger population density and become centres for excellence • Lancaster would want to retain some emergency and inpatient paediatrics function even if they were losing complex inpatient services for adults • Support contingent on provision of good access routes for ambulance and public transport • All changes need to be backed up by increased care in the community Why reduce inpatients? • Preference for streamlined day surgery that suits the majority of planned cases and more specialised care locally for long-term conditions • Recognise need to save space for more serious cases; prefer not to be admitted if unnecessary Why inpatients in Barrow? • All agree: Barrow most isolated and in need • Lancaster happy to travel to Preston • Kendal used to travelling and would gain services with this arrangement Why DCS in Kendal? • Most central, becomes ‘planned’ centre Preference: Reduce inpatient function across the region as a whole, with complex inpatients remaining in Barrow, DCS in Kendal and ACCs in each location

24. Unscheduled care (TNS BMRB 2013)

25. Experience of unscheduled care generally positive though one in five rated it as poor or very poor Waiting time the most significant cause of negative experience (TNS BMRB 2013) 66% 17% % Those who had a comment about their experience said... % SOURCE : General public survey

26. General views on future changes to services (TNS BMRB 2013)Local clinics strongly supported for minor conditions; proximity of A&E a vital consideration if there is an urgent need for unscheduled care • Overall: Nurses normally thought appropriate, given a strong preference for dealing with minor issues as locally as possible, across areas. Strong interest across areas in up-skilling local primary care staff, including pharmacists, and services to deal with more minor complaints. • N LancsandBarrow: Positive experiences of community health units strengthens confidence in this in • S Lakes: Minor injury units with longer opening hours suggested as a replacement for Westmorland Feeling unwell or minor accident Seriously unwell or major trauma • Overall: A&E or specialist GP required for mid-level cases. All areas agree this would require much more responsive GPs to work successfully. Quick access to fully functioning A&E seen as vital in major cases. • N LancsandBarrow: reluctant to consider alternatives to local A&E, but desire to reduce ‘bottlenecks’ by diverting minor injuries elsewhere • S Lakes: Interest in more effective immediate diagnostic screening locally, where appropriate, followed by travel if necessary At risk or chronically ill (ongoing) • N Lancs and Barrow: Specialist nurses already thought to play an effective role closer to home (e.g. diabetic specialist or ME specialist) – build on this. Desire for more ‘walk-in’ health centre facilities to support regular check-ups without requiring GP appointment. • S Lakes: Success in preventative, community-based care would depend on strengthened relationships with GPs and greater availability/ travel from other healthcare staff. • Stakeholders: Patients (especially elderly) need to be treated as whole person

27. Reactions to potential service configurations: Enhanced Primary Care (EPC) and Assess, Stabilise & Transfer (AST) vs retaining existing A&E function (TNS BMRB 2013) Why could it be in Kendal? • Barrow would prefer any single A&E for the region to be based in Kendal: central location and more palatable as a transfer destination than Lancaster Items for further consideration: • Preference would be to maintain existing services with new services as additions if financially feasible • Reducing further than 1 A&E and 2 ASTs is not acceptable to most; minor injuries units not seen to be sufficient to provide coverage for region if A&E reduced Why would it be acceptable to have one A&E? • Combination of EPC with AST gives confidence that AST will be sufficient for areas without A&E • Recognition of need to change and that a centralised A&E service might improve quality • Pre-existing acceptance that you can’t get everything locally – e.g. cardiac in Blackpool Why could it be in Lancaster? • Regional hub and largest population – Lancaster averse to losing A&E, and others see argument for it being here • Barrow able to recognise that they are least accessible for the region • Kendal already go to and rely on Lancaster • Uses existing service – avoids new building Preference: First preference is to maintain status quo, with addition of EPC, VW and AST to relieve pressure on A&Es. If necessary, most will accept an AST with transfer to full A&E in Lancaster or Kendal.

28. Conclusions: Attitudes to travel and transfer Attitudes to travel and transfer (TNS BMRB 2013)

29. People are currently travelling furthest for planned care, and travelling the least for maternity services (TNS BMRB 2013) Typical amount of time spent travelling to use the services by workstream • Most people’s journeys are 30 minutes or under • People whose closest hospital is Westmorland General Hospital typically travelled for longer (57% spent between 31 minutes and an hour) % SOURCE : General public survey

30. Quantitative results support these findings (TNS BMRB 2013)Respondents are least willing to travel further for maternity, and most willing to travel for planned care % • Around two thirds said they wouldn’t be willing to travel further for maternity services - this is compared to only a third of people who said they wouldn’t be willing to spend more time travelling for planned care services. • Respondents were willing to spend the most time travelling for planned care – around a fifth said they would travel over 45 minutes to see a specialist.

31. Around one in six (15-18%) are not using cars to access services(TNS BMRB 2013) Mode of transport used... 2% 82% 5% 3% - 82% 2% 4% 3% - 4% 1% 6% 6% 75% SOURCE : General public survey

32. This varied acceptance of travel is also reflected in the results of the criteria weighting exercise (TNS BMRB 2013) • Geographic access clearly thought less important than staffing levels and patient experience and health outcomes, and similar to other criteria. Has the least resonance amongst Lancaster residents, and most among Barrow residents Weighting exercise results: mean for each area. Base: c.40 per area Weighting exercise results: mean across all three areas. Base: 106 respondents Note: the ‘geographical access’ criterion did not specifically ask people about their willingness to travel, although this is likely to have factored in to their understanding of this theme.

33. Views on acceptability of travel and service requirements can be summarised through an overview of results of the trade-off exercises, showing a minimum acceptable service levels in each area (TNS BMRB 2013) • Maternity: all areas feel they need their current provision • Paediatrics: Barrow and N Lancs accept SIMPLE inpatient paediatrics; Kendal will travel • Unscheduled: all areas feel they need Enhanced Primary Care; Barrow will accept AST if A&E nearby; N Lancs insist on local A&E; Kendal accept current provision • Planned: all areas need SIMPLE planned care; prepared to travel for COMPLEX (so undecided about location) SIMPLEPlanned Care SIMPLEUnscheduled Care SIMPLEMaternity COMPLEX Planned Care (location undecided) SIMPLE Paeds SIMPLE Paeds COMPLEX Maternity SIMPLE & COMPLEX Unscheduled Care SIMPLE Planned Care INTENSIVE Unscheduled Care SIMPLE Planned Care • COMPLEX Maternity SIMPLE: perceived as routine, non-specialist care COMPLEX: perceived as more serious or requiring specialist care INTENSIVE: perceived as a ‘full service’ A&E Preston, Manchester etc

34. Integrated care

35. Stakeholders stressed the need for a more joined up approach (TNS BMRB 2013) • “Everybody understands about general practice, and everybody understands something about hospitals. But all that panoply of services that covers the gap are ill-understood” “People get passed from pillar to post in the system, because there aren’t really the incentives for anyone to take control of them” GPs • Community and third sector services need to be mapped • GPs need to know about other support services and refer patients there – integrating health, social care and third sector, focusing on preventative care and early intervention • Need immediate alternatives to hospital admission • Change GPs’ and hospitals’ defensive ‘ours’ and ‘yours’ approach to patients, and work cohesively to serve the whole health economy • Break down barriers between primary and secondary care – e.g. opening a GP surgery at Westmorland General; share patient records • Hospitals need to support discharge into the community or home, particularly elderly • Hospitals need to understand out-of-hours services; not use them as a decanter for A&E: important that people are routed to the appropriate service Community Care (incl. third sector) Hospitals “You need to build in that whole range of voluntary support into those pathways, we’re not integral we’re an add on for those who remember”

36. Weighting Criteria Exercise

37. Quant and qual approaches to the weighting criteria(TNS BMRB 2013) Although the methodology of the weighting exercises differed in Include and Create, the results supported each other • The criteria used in the quantitative survey used the same titles and short descriptions as were used amongst clinicians – no additional information was provided • Respondents were asked to rank the 8 criteria in order of importance • In the Create workshops, edited descriptions were used to make the weighting criteria simpler and were discussed to check understanding • Respondents were asked to assign each of the 8 criteria points, with a total of 100 to assign • The weightings given were then discussed as a group to allow respondents to explain their choices 100

38. The eight factors presented in the quantitative survey – INCLUDE (to be ranked in order of importance) Respondents were asked to assign each of the 8 criteria points, with a total of 100 to assign (TNS BMRB 2013)

39. How criteria were presented in qualitative workshopsWhich things are most important to consider when deciding on future services? You have 100 points to distribute between the 8 themes below – give more points to the areas you think are most important, and fewer to those you think are less important. Make sure the total adds up to 100!

40. How participants engaged with the themesThe following four criteria were closest to the patient experience, and most salient (TNS BMRB 2013)

41. How participants engaged with the themes These four criteria were seen as more distant; decisions would be “out of our hands” (TNS BMRB 2013)

42. Criteria which relate most closely to patient experiences scored highest overall in the workshops (TNS BMRB 2013) Proportion of points attributed to each theme SOURCE: Weighting exercise results: mean across all three areas. Base: 106 respondents

43. Differences between areas to some extent reflect current concerns with local services (TNS BMRB 2013) Staffing levels - “having the right numbers of staff with the right skills in place to deliver the service”. Kendal rated this is most important, linked to perception that staff at WGH inexperienced Patient experience and health outcomes - “overall experience for a patient”. Better experiences reported in RLI in terms of patient care, nursing, and feeling looked after, compared to Barrow and Kendal Geographic access – “location of services, ease of travel to them, transport infrastructure”. Lancaster has best access, and places less weight on this criterion than Kendal or Barrow Weighting exercise results: Base: 106 respondents

44. Age UK South Lakeland engagement listening event May 2013: key themes • Communication skills: an area for improvement e.g. staff communication skills, “you should not be grilled for an appointment” and NHS-NHS organisations • Communications systems were also seen as an area for improvement such as IT e.g. “Booking system – a four-page letter, which included a password, to change an appointment either by phone or computer” • Travel: people are used to travelling for highly specialised care, there is still a need for some services to be local e.g. “…now takes three buses to get to Westmorland General Hospital; from Grange” • Patient experience: examples of positive experience e.g. “Furness General Hospital nursing team – nurses very understanding, talk to us in language we understand and share information”, and examples of poor experiences including poor care, “Delay led to collapse and emergency admission” • Staffing levels are an area of concern i.e. are there enough staff in primary and secondary care? • Potential change is acceptable, people are familiar with change in the NHS but would like to see positive change sooner rather than later so people can benefit from change: older people need good care today, not at some point in the future • Care pathways are an area for improvement, with particular regard to transport, discharge and integration arrangements e.g. “Health/Social Care – passing between the two don’t work well together”. Good care pathways are important to ensure independence of older people (Commissioned by better care together, carried out by Age UK South Lakeland with support from better care together)

45. Key themes to emerge from the Cumbria Youth Alliance engagement activities April - May2013 were: 1. A good awareness of the availability of health services 2. Access of health services could be a problematic issue for young people e.g. making appointments, delayed appointments, waiting times e.g. “Waiting times too long” 3. Young people understand they have a responsibility for looking after their own health 4. Patient experience with GPs is of a higher standard than experiences with A&E e.g. “They fixed me, good service, helpful” 5. Willingness to travel is affected by ability to travel e.g. reliance on public transport 6. Different communication skills are needed to work with young people (Commissioned by better care together, carried out by Cumbria Youth Alliance via focus groups, discussion groups and surveys)

46. better care together engagement March 2013 to date

47. Non-externally commissioned engagement • There was a range of engagement activities which were arranged and facilitated by better care together. • In addition better care together were invited to attend several events, meetings and discussion groups to discuss and engage on its programme • The following section provides a summary of this engagement

48. Key themes to emerge from the Information Bus Roadshow engagement activities in March – April 2013 were: • Travel: Whilst not keen on travelling for the sake of it, most who commented on this issue were willing to travel if that meant that they would receive the best care. Travel was particularly an issue for those who didn’t have their own transport. • Staffing: Staff on wards seen as not having the capacity to give a level of care that’s needed. Suggestions made re: more vocational training and hands on approach from junior staff, plus the need to “bring back matrons”. • Access: comments were made re: out of hours GP access, the amount of time that some people had to wait to see their GP of choice and a sometimes lack of empathy from GP reception staff. Feedback was given re: the need to keep some services local • Care pathways and lack of integration was an issue referred to e.g. “Have been to Royal Lancaster Infirmary, nurses good, but consultants change so start all over again. Went to Westmorland General Hospital, they didn’t give me the results. GP couldn’t give me the results so need to go back to Westmorland General Hospital.” • Clinical risk concerns: fear that loosing services could put lives at risk

49. The main themes to emerge from the Public Field Events held in May 2013 were: 1. Access: this can be problematic e.g. accessing appointments with preferred GPs and accessing appointments with GPs evenings and weekends. There was also confusion re: role of PCAS in Kendal 2. Communication: an area for improvement e.g. staff communication skills and NHS-NHS organisations. NHS internal systems were also areas for improvements e.g. patient notes transfer and appointments 3. Care pathways: these can cause confusion and see a lack of integration e.g. between NHS organisations and NHS partners such as social services 4. Willingness to/travel: people are used to travelling for highly specialised care, there is still a need for some services to be local 5. Clinical risk concerns: there are perceived risk areas e.g. travel when poorly, worries of hospital infections and cleanliness standards 6. Staffing levels are an area of concern i.e. are there enough staff in primary and secondary care and were staff roles hampered by paperwork? There were also queries re: numbers of back office staff and numbers of managers

50. The main themes from the focus group with persons with life limiting conditions May 2013 were: • Patient experience of primary care, secondary care and community care all include positive and negative examples: • Access to GP appointments can be a struggle, LTC team very helpful, out of hours service can be a long wait and engenders feelings of isolation • Secondary care experiences are poor on the ward, medication delays and too many patients • Community staff are seen as “come to do” but concerns of “lots of different people” and poor documentation systems • Staffing comments range from “nurses are excellent” to lack of continuity in handover and a need for more frontline staff and mental health teams • Willingness to/travel: people are used to travelling for highly specialised care, there is still a need for some services to be local. Volunteer drivers can be popular compared to ambulance drivers