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Mike Ridley opened the meeting with an overview of the launch meeting and some feedback from national ARMA.
Three mixed groups of patients and professionals then discussed the following topics - Access to services, Resources centres, and Patient preferences.
The groups then feedback to the whole meeting, before Helen Duffy sought attendees views on issues affecting patients with musculo-skeletal disease.
Summaries of the feedback from the sub-groups -
ACCESS TO SERVICES
Transport
Car/Ambulance: how do I organise this? (feedback within organisations)
Bus: Routes / different hospitals / wheelchair access
Cost
Blue badge access
Parking
Blood Test Monitoring
Location: clinics / GPs
Time to suit: a.m. / p.m. / evening / weekend
Difficult when regular tests
What does Rheumatology department offer initially?
Form
Speed of blood test
DNA rates: how to improve this?: education / convenience/
reminder service: phone / text / e-mail
Clinics
Time to suit
Access to urgent review: advice / nurse / GP
Via GP or self referral?
Injections
Who does it? DN / PN / CNS
How long can this take?
Reception
Self check-in / computers
Staffing levels
Advice Line
Access when urgent (Triage system?)
What is fair wait? 24 hours?
Approx 20 calls per day: who needs doctor’s advice?
Access for GPs for advice
PALS
Who is using it?
Is it used in the right way?
Sessions at Haywood
Advertising
Conditions explained
Individual notice boards
Leaflets
Computer access
DVD / Video information: How do I get this? Cost? Where?
Forward Planning
Holidays
Future appointments
2-way: cancellations / swaps
DNA rates
Computer system to cope
Writing these appointments down / print out
Calling in for appointments
Name calling
“Flashed up” : name? / hospital number? / date of birth?
Numbered ticket
Clinics
Where held
Look at statistics: who’s where (postcode analysis)?
Ask where people would like to go
“Super centres”
Knowledge level of staff
“Mini team” going out: the expert community group
Orthotics
Access
Time waits
Where else can I go?
Suitability of what given
Choice of styles / colours
Systems used
Cost
Websites
RESOURCES & INFORMATION
What sort of Resources?
Support groups
Expert patients
Internet: charity / specialist / Haywood Foundation / ARMA web sites.
Magazines / Journals
What sort of Information?
The sort that comes from experience as well as from: CAB / Agencies / Government departments
Info on disease / condition / syndrome / drugs
FAQs
Info on the Department: what it does / who is in it
What to do in particular circumstances
How do we use information?
Decision making on the future
Emotional / psychological support
Practical support, including equipment
Informed choices
“Help” telephone and e-mail
But there are problems with a resource centre
“Over-advising”
Accuracy and quality of the information
Overwhelming amount of information
Cost
Manning
Confidentiality
Training
Motivation
Notice Boards
A useful tool but they must ATTRACT, then INTEREST and then INFORM
Should be in a useful position, not just filling an empty wall
Should be kept up to date – could it even be dated & changed daily?
Ideal for the hospital, patients and groups
Could groups have their own display area?
Focus For:
Comments
Petitions
Compliments
Complaints
Shopping List for a Resource Centre
Finance from PCT and/or Haywood Foundation
Equipment:
2 x computers (with ergonomic keyboards)
Printer (consumables would be a continuing cost)
Dedicated BT line
Electricity
Cupboards & security
IT support
Chairs / Desks / Shelving / Racks / Pamphlets
People:
Coordinator
Volunteers
Trainers
Conclusion
Unanimous agreement that a Resource Centre would be valuable
Location is a problem, but it is better to start small NOW and to prove the value for something bigger in the future
PATIENT PREFERENCES
Timing: Shelton Pool
Communication: held information
Unhappy with current opinion: second opinion / patient toolkit
Understanding & Access to information: treatment information at suitable time
Access to expertise: PRN
Preference to be understood: vis-à-vis access to interpretation; who can articulate the problem; not so much language necessary more intellectual understanding (medical-speak)
Mike Ridley concluded by setting some aims for the future -
- Decide local objectives
- Work on local objectives
- How do we link with the PCT?
- Have we got the right priorities, and how can we influence the right service at the right time?
- Develop a PR strategy
The date of the next meeting is 28th September.
