Breathing Space Evaluation

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Breathing Space Evaluation
Research Evaluation Mini-conference 28 January
2009

• Qualitative Research

Qualitative Stakeholder, Patient Carer
Interviews Julia Burrows Specialist Trainee in
Public Health
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Todays Presentation

• Summary of qualitative research undertaken so far
• Overview of the latest set of stakeholder
  interviews
• What happens next?
• Discussion and Questions

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Qualitative Research Summary

• Qualitative Research
• Semi-structured interviews allow people to talk
  around a subject and bring up issues that may not
  be elicited by direct, specific questioning
• Complements quantitative aspects of the Breathing
  Space evaluation to enable the triangulation of
  all findings to give a richer and more rounded
  picture of the impact of Breathing Space

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Qualitative Research Summary

• 2 strands
• Patient and Carer Interviews Before After
• Stakeholder Interviews Before After

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Patient Carer Interviews Before

• Ten patients and seven carers were interviewed by
  Julia Burrows, Specialist Trainee in Public
  Health, between April and May 2007 before
  Breathing Space became operational.

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Patient Carer Interviews Before

• GAPS IDENTIFIED IN ROTHERHAMS COPD SERVICES
• Knowledge and expertise in primary care
• Information (medical and social, for example
  about benefits and housing advice or access to
  aids and adaptations)
• Information about, and monitoring of, individual
  condition
• Respite care and carer support
• Planned and co-ordinated care so that crisis
  management is avoided
• Somewhere to contact for information and/or
  reassurance for patients and carers (for example
  a telephone helpline)
• Recognition of COPD
• When the hospital discharges you, you are on your
  own, there isnt a lot of expertise out there .
  And its crisis management after that (Patient)

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Patient Carer Interviews After

• Nine patients and six carers who have used
  Breathing Space were interviewed by Hannah
  Jordan, Specialist Trainee in Public Health,
  between November 2007 and February 2008.

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Patient Carer Interviews After

• Positive things
• The staff, the staff, the staff
• The other patients
• Confidence in managing breathlessness
• Being cared for by experts / the concentration of
  expertise
• Not being judged
• Being valued
• The building

• Negative things
• Virtually nothing. One worrying case of not
  having understood what Breathing Space was for,
  but otherwise only negative comments were along
  the lines of maybe a bit more equipment for the
  gym

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Patient Carer Interviews After

• Conclusions
• There is a real need for COPD care in Rotherham
• The care Breathing Space provides is valued
• The care Breathing Space provides is different
• The impact of Breathing Space on smoking
  cessation was not covered in these interviews as
  there were no current smokers amongst the
  patients interviewed
• It's made me realise that life is for living,
  not for smoking and abusing your body (Patient)

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Stakeholder Interviews Before

• Fifteen stakeholders were interviewed by Mark
  Strong, Specialist Registrar in Public Health,
  between October 2006 and January 2007 while
  Breathing Space was in the final planning stage.
• Stakeholders interviewed were
• Patient representative
• Local councillor
• Chief Executives PCT, RFT, CRT, RMBC
• Directors Social Services, Public Health
• PCT Professional Executive Doctor
• Clinicians physiotherapist, GP, Respiratory and
  Public Health Doctor
• Service Leads Breathing Space, Smoking
  Cessation

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Stakeholder Interviews Before

• MAJOR THEMES IDENTIFIED
• Perceptions of COPD
• Doctors
• Patients
• Opportunities arising from BS project
• to improve quality of life
• to right wrongs
• to raise profile of Rotherham
• Threats
• competition between PCT and FT
• risks to funding post 09/10
• The Smoke Free debate

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Stakeholder Interviews Before

• it's a fight for people in Rotherham to make
  sure it works, not to get anybody coming in and
  saying I don't really think this is going to
  work get them away. You know we don't want
  people like that, we want people who can see that
  vision, and not just see it now, but see it in
  two years. (Pt rep)

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Stakeholder Interviews After

• Eighteen stakeholders were interviewed by Julia
  Burrows, Specialist Trainee in Public Health,
  between October and November 2008
• Interviews
• Length - between 40 and 90 minutes each
• Tape recorded and transcribed
• Analysed and coded for key themes
• Ethics and consent
• Issues about participants being identified by job
  title
• Report to be published on Breathing Space
  Evaluation website

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Stakeholders interviewed for the second time

• Chief Executive, NHS Rotherham
• Chief Executive, Rotherham NHS Foundation Trust
  (RFT)
• Chief Executive, Rotherham Local Authority
• Director of Public Health, NHS Rotherham
• RMBC Council Member for local Area Assembly
• Expert Patient / Breathe Easy group member
• GP not directly involved with the project
• Smoking Cessation Service Manager, NHS Rotherham
• Service Re-design Lead, Breathing Space
• Chair of Professional Executive Committee, NHS
  Rotherham
• Consultant in Public Health Medicine, NHS
  Rotherham
• RFT respiratory consultant not directly involved
  with the project

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Stakeholders interviewed for the first time

• Senior Finance/Special Projects Officer, CRT
• Director Adult Services, Rotherham Local
  Authority
• COPD commissioning lead, NHS Rotherham
• Responsible Director (Provider Services), NHS
  Rotherham
• Nurse Consultant, Breathing Space
• Clinical Manager, Breathing Space
• Coalfields Regeneration Trust

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Aims of Interviews

• To determine the stakeholders views of Breathing
  Space in the 18 months since it had become
  operational
• To enable lessons to be identified from the pilot
  phase

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Key Themes Identified

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Vision

• How do we ensure that this service keeps its
  soul? (Initiator)
• providing continuityis vital in this program
  because of such big cultural changes etc and
  occasionally reminding people, you know, what the
  original plan was (Initiator)
• Collective corporate memory does fade over
  timeyou have to create opportunities erm to
  refresh peoples memories actually and get
  continued buy in (Chief Executive)

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Breathing Space Model

• I wonder whether the service model had been
  sufficiently rigorously tested in advance or
  whether it was on a bit of a wing and a prayer
  and the fact that we have had to significantly
  rework the service model for beds is certainly
  evidence that it wasnt right
• (Chief Executive)
• We dont ever get an opportunity to do a whole
  service in one go and start with a huge amount of
  funding so we were starting from a blank page and
  really going for it all in one go rather then
  faffing about with bits of posts here and there
  but if nobody has done it before you have got
  to make it up, havent you? So you make it up as
  you go along with all the right skills in place,
  and some people found it very challenging
• (Initiator)

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Cultural Change

• We were trying to be perhaps that little bit too
  untraditional er for peoples comfort
• (Initiator)
• Its sort of shifted again to a reactive clinical
  model than the upstream public health model
• (Initiator)

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Perceived Impact

• I think there is kind of a positive vibe about
  the day rehabilitation part of the servicestill
  kind of slightly masked by the fact its a
  glorious building that has been significantly
  underused to date
• (Chief Executive)

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Responsibility

• I feel a huge responsibility erm to people who
  have COPD and to the wider respiratory community
  becauseif with all the resource we have got..I
  cant make it work both cost effectively and
  making life better for people with COPD..and
  carers..then all my colleagues ..throughout the
  countryand in Europe wont get the resource to
  do it
• (BS Operational)

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Local clinicians and managers (not directly
involved)

• They want to be in a bunker on their own and seen
  as an ivory tower of excellence
• The less you spend on infrastructure the more you
  have to spend on people
• The most important rehabilitation is to stop
  smoking. You dont need a multi million pound
  building to do that
• All the patients seem to have initial assessment
  but then are waiting for things to happen

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Management and Leadership

• What we didnt do was put in extra money for
  capacity to initiate a programme it was a
  completely different managerial task (Initiator)
• I think its very difficult to run a model
  wherenoone reports to anyone nobody knows
  their boundaries (BS Operational)
• Physios wanted to work as physios, the OTs wanted
  to work on OT and the nursing staff wanted to
  work as nurses because at least if everything
  else was all in a muddleyou have a comfort in
  what youre doing (BS Operational)
• Accepting the fact ...thatithasnt gone quite
  to plan andso accepting thatit takes a lot for
  people to accept that they are wrong in something
  (Patient Rep)

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Evaluation

• Patient feedback appears to be extremely goodand
  its doing them goodbut the big problem is we
  cant really prove it because the computer
  systems, quite frankly, are a disaster
  (Initiator)
• I think we are making a huge impact but proving
  it is going to be hard (BS Operational)
• (T)he jury is still out but then Breathing Space
  is an experiment, its innovative so one would
  expect the jury to be out (Chief Executive)
• (We underestimated) the time it takes to get a
  new service fully operational (Initiator)
• I would suggest any dialogue about any changes in
  arrangements or any future funding issuesshould
  be initiated sooner rather than later (Chief
  Executive)
• Theres certainly a nice, lovely, touchy, feely,
  happy thing about going which actually I think is
  beneficial even if thats all there was - thats
  beneficial though youve got to be careful how
  much money you put into that happy feeling, but
  then I suspect a lot of our work is actually just
  to temporarily make people feel better thats,
  thats what we do (Local clinician/manager)

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Partnership and Prestige

• None of us could make it happen on our own..(it)
  has helped the kind of trust and cooperation and
  just person contact that are really useful for
  moving on to other changes (Chief Executive)
• There is a positive side of having such a
  facility in Rotherham and erm the kudos it brings
  (Chief Executive)
• If I was giving a list of..the top 10 things that
  I am really pleased withthis would be one of
  them (Chief Executive)

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Political environment

• There isnt any mechanism within the existing
  system thatwould allow you to charge a premium
  for quality so ..if we owned it.. I couldnt
  say because this wonderful new place that is
  very beautiful, you are going to have to pay
  tariff and a half (Chief Executive)
• I think its a wonderful micro commissioning
  scenario There needs to be a review of the
  scale of Breathing Space in five, six years time
  and the question is who will drive it because
  its not in the service interests necessarily to
  do it (Initiator)
• If you can imagine a future where the Primary
  Care Trust is just commissioning servicesit will
  be an expensive service (Chief Executive)

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Building

• The building politically became one of the things
  that would enable funding for the service
  (Initiator)
• I think it has made them take a bit more pride in
  the area. .It looks like a hotel in Dubai
  (Local councillor)
• The building isnt fit for purpose . Its a
  beautiful building but theres a lot of wasted
  space (BS Operational)
• I think the building up until now has been a
  hindrance more than a help (BS Operational)
• (T)o see this massive area and when you go to the
  atrium it feels nice you know. Its cooler down
  there and whether its because you havent got
  the ceiling coming down on you.. you feel oh I
  can breathe in here its not restrictive
  (Patient Rep)

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Patient experience

• I understood why they (patients) thought it was
  wonderful but it was quite touching in a way.
  People were polite to them and nice to them and
  asked them what they wanted to eat and they'd
  never had that before. Its very sad
• (Local clinician/manager)

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You can stand there at night and you over look
atrium and there would be somebody at the other
side and you will wave and talk and you think you
are on a ship (laughing) its so lovely to be
there (Pt rep)
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Key Themes Identified
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What Happens Next?

• Are there any gaps in the qualitative research
  programme? For example
• What about patients who attended for assessments
  or 1 or 2 sessions and stopped coming? Who are
  they? What is their feedback?
• What about patients who choose not to come?
• Report to be sent to stakeholders who
  participated in research and published on the
  Breathing Space Evaluation site

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Discussion

• Any Questions?
• Grateful thanks to the stakeholders for agreeing
  to take part in this research