Spalding event feedback from patients (PDF, 223KB)

Diabetes Event Feedback
South Holland Event
Ideal World Scenario
What could be Improved/Negatives
Access to Diabetic Nurses at QEH is good.
Happy with care from GP - Community - Secondary Care
Type1 - Carbohydrate Counter - provided by hospital very good
Retinopathy Service (Mobile Unit)
GP Practice woeful at diagnostic just refer " Fully booked" in an emergency
Just somebody - only receptionist
Make carb counting part of diagnostic conversation
Over a year to get on a course
Free exercise at clubs
Regular checks once diagnosed
Nationwide screening
Free Podiatry
Finger prick machine provided by diabetic nurse
Excellent Child Specialist Nurse (Type 1)Support, Signposting
Assumption that CP has already told you i.e Change regime
Find things out in ways you don't want
Social support for people with need such as footcare
Mobile/drop in diabetic unit (local)
Excellent Diabetes Practice Nurse (Type 2) x 2 Appts per year
Conflict between Primary and Secondary Care
Designated Nurse /GP
Auto email appt reminder
GP emphasis on Type 2 (Funding for GPs)
Best Medicine not the cheapest
Sufficient back up for Diabetic Type 1 with early onset Alzheimers
Diabetic Nurse / Clinic at Practice
Responsibility of patient/self control
GP practice not knowledgable
Test Strips - enough available
Access to footcare
Delivery of drugs to home
System does not support people who can't help themselves
More dieticians
Food labelling
Healthy Living Centre(P,boro) need something like this in South Holland and
Welland (Specialist Services and Specialist Consultants)
Directory of services - in GP Surgeries
More access to spotlight courses - inform people about spotlight
Better Food Labelling
Seen regularly at surgery/ see the same person and build up good rapport What if not capable of complain
Excellent Child DSN at hospital
Travel to dialysis
Retinopathy Service (Mobile Unit)
Assumption of older people 'down to age'
Excellent DSN
Service available at GP + Relationships
Carb Meter (Pre -Pump)
Individual treatment at GP Practice
Information flow early stages
Lack of standardisation
Diabetes training for all clinicians - mandatory training
Actual service support not leaflets
More resources for individuals i.e. strips /pumps etc
Local services choice to go where work/where live - later services in the week/
evenings and weekend services
Better access to podiatry, eyes etc
Better referrals to MH some people get depression etc
Good GP Practice (Type 2 for 10 years). Annual Check Up at clinic
Retinopathy Service (Mobile Unit)
Info/notes not shared across boundaries
Used to have 2 appts a year - now 10 all over the place (more local and together)
Better/Quicker waiting times
Education extended to Business (Time off for appts)
(Type 1) carb Counting and Check Up by switching GP Practice
Better training for clinicians regarding diabetes (across the patch)
Coming round from general anaesthetic ask patient for amount of insulin - should
know(patient had op)
First Aid Training - better education for diabetes
(Type 1) Pilgrim Diabetes Nurse Good. Direct Access esp emergency
Retinopathy Service (Mobile Unit)
Had to do own injections at Fitz & PCH, didn't know amount/pen use
Bostonian - GA left on insulin and given no glucose (no checking) had to ask repeatedly for
glucose - no check 4 hours (stopped breathing + resuscitation)
A prescription that flowed
Johnson Hospital - Sorted IM balance
Retinopathy Service (Mobile Unit)
Good written information from Johnson Hospital
Insist they "know best" clinicians
GPs and nurses Munro/Beechfield and Abbeyview - need education
Don't always have copy /info of scripts on person go to hospital no meds given
Consultation of redesign within diabetes care (esp insulin pens
Better support and groups/events on diabetes
Local Service of Top Quality
Blood Department - very good
Moved from Boston to Peterborough care 100% better
When need scripts from GP not always helpful and on time
Education courses not consistent
See consultant/high trained nurses
Chiropody service -free/local - regular checks
GP/Johnson = good service, sees consultant at Johnson
D. Nurse does return calls in spalding
Doing PDAC at Mo Boston not offered PCH yes
Footcare: If have emergency wiped off list
Healthy Living Centre (Pboro) : Good diabetes service
Poor transitional services
Retinopathy local service
Initial education programme
Every 6 months + access inbetween routine - more if there have been
Gosberton has excellent nurse has diabetes
Induction when first diagnosed/Spotlight Induction
Complaint handling
Retinopathy Service (Mobile Unit)
Individual treatment at GP Practice - lack of
Being asked to self-manage of hospital when not appropriate
Training of staff
Written info from Johnson Hospital
Unhappy about nurse making changes to prescriptions
Concern of quality of training of diabetic staff e.g nurses
Diet Advice
Portion Plates and measuring spoon
Carbs and Cals Apps (cost involved) + Book
Knowledge - detailed on what are the do's and don'ts
Timesulin - Timer that fits on top of Novopen and counts how many hours since you
have had your injection and resets itself to zero -(costs £40, Battery lasts a year)
Test Strips - enough available
Sharing experience community or other groups (facilitated) Promotion Profile for
events/info etc
Choice of pumps not told which one
Make people think about themselves
Limbs (injecting) can cause lumps etc - would have to pay to remove - should
be free
Contract with diabetes team, know how to help the team that are helping you
Carb Counting
Boston pre and post op care
Podiatry (lack of) x3
Test strips - sometimes surgery not got enough in
Drugs - short time for re-ordering drugs
Improving Self Management
PDAC/ Daphne Courses = more classes and an evening class/weekend classes for
people who work (have to use holidays from job)
No guarantee of pump after PDAC
Blood Testing Kits to monitor and extending education 2 new diagnosis
Care homes/HC etc diabetes trained
People's regimes differ hugely for examples: P'boro couldn't believe amount insulin
patient on (from Boston)
Lower No of Diabetic consultants - why is this ?
At one point patient had consultant + Diabetic Nurse in appt to discuss management
of insulin - very positive experience
Ready access to a nurse (with skills) would also support and services in local area,
fewer appointments with more services at one point in time
Raise profile of diabetes + differences between 1 and 2
Cheaper Gym membership/swimming etc
Access to weight management clinics
Mentoring schemes - funded
Riding therapy centre for children newly diagnosed PEDS (Ponies Educating
Diabetics + their siblings- in Surrey) I will run it!
Access to best/most up-to-date equipment
Technology - best available
Using local facilities & enhancing not having to travel to pilgrim (puts stress
on people)
If have to travel - a service that is easy, cost effective, has a support service
Carers access to information
Get rid of message Boards on Diabetes UK Website (context/ mis information re:
Full information on diagnosis
Software application share Re: Calorie Counting
Be careful with information, don't generalize (Carb Counting, Food + Other glucose
"The Balance" (Diabetes Uk)
PHB Childrens Team brilliant - followed from hospital 2011 to home (dietician,
consultant, psychologist, diabetic nurse) Seen at home within 24 hours
Needs signposting/Education
Psychological Support
Individuals need to take responsibility for own care but needs the tools to be able to
do this e.g monitors/strips
Enough Test Strips
Enough Test Strips
Reminders re meals
Timesulin (novoecho) - reminder re taking
Good initial education (or any) x2
More access to education - weekend/evening session and more regular
Encourage community to share experiences - Peer
Individual responsibility - lots of info out there
Reminders (Tools)
What could be Improved/Negatives
Regular check up of feet - free? Not had feet checked
Not seeing a doctor during the year - only seeing nurse
Lost a direct contact which had had for many years via hospital which was supporting
Not all Drs have the same approach, treatment can be changed
Footcare is all chargeable - £30 per treatment one appointment per year would help
Ideal World Scenario
A centre for diabetic care
More quality control in GP
Consistent person to look after you
More time with clinician (wait long time to be seen in a few minutes)
End to "rationing" of test strips (box of 50 at a time not enough) 6/7 times for
carb counting
Pre + Post op Boston Hospital care very hit and miss
GP taking consultant prescribing advice
4-6 weeks to see diabetic nurse - at last visit
Time to get appointments - waiting too long
Podiatry (lack of services)
Appointments cancelled (Acute)
Early diagnosis routinely
Stigma - Type 2 (national campaign)
Type 2 - not seen in community but seen in GP Practice
Lack of footcare locally (podiatry)
Negative experience in hospital - lack of expertise available at weekends in hospital
No information on diabetic ward about hospital food - Carbohydrates /nutrition (QEH)
Lack of support nutrtional
Diagnosis by GP of Type 1 - missing vital signs
Breakdown of service - retirement of lead clinician
Lack of continuity
Poor service when transfer from child to adult services
Reduction in staffing levels at PHB (last 3 years)
No cohesive service
Seeing diabetes nurse in/venue consultant at a different venue
Improving Self Management
Testing Strips (Access & Quantity)
Diet advice ( what not to eat - Induction guides)
Advice Line - call anytime to ask for advice
Hypo Awareness
Record Booklet (to track trends/changes to make patient more aware of triggers etc)
Individual dietician plans (specific/individual needs e.g allergies to some
recommended foods - what do they do)
Where infection presented automatically add more test strips as needed
Pharmacy in practice to have adequate supplies of meds (insulin)
Clubs/meetings -peer support & advice
Access to services/supplies facilitated elsewhere (Boots service)
Good initial education - diet/exercise
GP Surgery (vary greatly, need specialist in diagnosis and care
Knowing potential complications
24 Hour access for expert help and support
Knowledge of employers + in the work place
Diabetic hotline for emergencies (e.g waited for 11/2 hours for ambulance, dr
not equiped with glucogen)
Access to services for diabetics e.g Chiropody
Access to - telephone initially expertise
Education courses (available locally especially when 1st diagnosed
Pro-active professionals
Support for children in school
Stem Cell research
Continuous glucose monitoring/pump combined
Footcare every 2-3 months
Always see specialist GP and Nurse in good time
Directly contractable -email answered in 4 hours
Enough Test Strips for Self management
GPs to have high level of knowledge
Info to be given when diagnosed has to be very high quality
Diabetes UK website excellent, some websites give poor - dangerous information
Longer appointments - for better conversation
Local Diabetes group to have more support from GPs surgeries to promote local events
Insulin Pump (Type 1)
Insulin Cooler
Local Dialysis Service (South Holland)
Food labelling (portion size)
Standard pack of information for each type containing - Whats available,
Where and what resources/support is available
More expertise in Maternity Services - Diabetes Specific
Refresher course - Managing your condition
Regular monitoring when first diagnosed to prevent complications
Welland Event
Ideal World Scenario
What could be Improved/Negatives
Good access to GP Practices and GP for Diabetes care
GP Practice good at monitoring diabetes and refers to secondary care
PSHFT when needed
Continuity of care
No preventative information for people with pre-diabetes
Preventing Diabetes - Better services for pre-diabetes
More information needed for children with a parent that has diabetes
More information for carers of all ages
Help with weightloss
Carbohydrate counting course and the best way to apply,
Access to gym/exercise
Advice on changing needles and frequency
Call in Centre dedicated to Diabetes with specialist nurses, retinopathy,
dietician, podiatry (everything in one place / all checks done at the same time
including consultant
Reminders to take insulin - i.e text messaging
Diet sheet for pre-diabetes with each of the food groups and how they impact on
Community transport for those with travel issues
each other.
More education (continued education) - What do the measurements mean, A
card with conversion for blood results (old measurements to new),
Carbohydrate counting
A self-help checklist with parameters and pit falls
Psychological Support
Set yourself a good -target/incentive
Sometimes good discharge outcomes by following up with community
nurses. When elderly patients are discharged from hospital.
More specialist nurse input
Retinopathy Screening - referred if needed to hospital for monitoring
No access to dietitician
Service is working - keeps me in good health
Ease of access via telephone to specialist nurse (always calls back) which
is important when you forget things
No central point with dedicated diabetes services i.e Retinopathy , specialist nurses
(Excellent facility -dedicated diabetes centre - Norwich)
Geography Hasn't seen Dr more than once in 12 years- no review of diagnosis? Is he selling himself
short by lack of service
3 Drs seen over a month missed Diabetes - nurse picked it straight up, drs didn't know
what to look for
Under 2 teams (GP nad PB Comm) but although hyperglycaemic no one is looking globally
at issues
Good basic information (Sheepmarket)
Diet Nurse - not much use - was going to email info but didn't, didn't understand pulses etc
also 2nd appointment still no follow on ( Builder with packed lunch)
Access to dietician
Seeing the same person each time (ask)
Everything works well, same person - saves re-explaining
Telephone number - direct access (Pboro)
Improving Self Management
Structured Education-continued (face to face group sessions) - What is Diabetes,
Connect with other diabetics, How to manage diabetes, Dose adjustment/dose levels
Education Courses
Raise worries with professionals - long term issues
Plan for the needs of individuals
Understanding what the long term disabilities are/could be photos-stats
Would deliver all of the 15 healthcare essentials
Just because you feel "well" it doesn't mean everything is ok
You are told the negatives of not controlling your health but not the benefits if you
Improving Self Management
Dietary info from nurse is very good
What could be Improved/Negatives
Ideal World Scenario
Under resourced at practice - long time to see specialist nurse when to practice end of July appointments kept being delayed. Seen new years eye (St Marys)
Peace of mind that the service I am getting is the best quality I can get
Personalised approach - not just go on a diet - but longer term 'customised'
Conflicting dietary advise by deficient nurses
help strict diet with monitoring
Seeing same person - continuity
Retinal Screening
Access to GP's and care - immediate access to nurses
Always sent to WWW………
Don't set targets for bloods
Better communication between professional
Extended time to get further information regarding change of lifestyle
More thought to multi-meds
How feel today nay change - ongoing support
Setting targets personally as an incentive
Access to education courses + refresher courses - What is diabetes
No tablets
Education - What is diabetes, dose adjustment, changing needles, has to manage
Weightloss - regime especially for people with diabetes
Information on "Food" goods that you buy aimed at giving people with
diabetes correct info - hidden sugars
Lists of good food (when you have diabetes and lists of bad foods
Test machine + Test Strips for testing
Have a diabetic nurse come to you - if can't get to centre/GP etc
Everyone should be able to access Daphne/Desmond Education Courses
Early evening appointments would be useful
During your MOT/Blood Tests the follow on is very good
Being able to ring - diabetic nurse (vanessa)
Deepings + Little Practice - immediate access to diabetic nurse - Open
access policy
More thought given to multi - meds
Able to get hold of someone when needed
GPs ringing proactively
Not enough support with the complications of diabetes
Specialist Doctor not listening to patient
Retinopathy van very convenient (walking distance) + quick
Being pumped full of more and more insulin with no effect
Retina screening is now better
Dietary advice - personalised specialist dietician not much help
First diagnosed education event very good
Issues re: Diabetes nurse, understanding equipment + access
15 patients is covered by St Mary's on review
Sheepmarket - very good (specialist nurse (organised with appointments
and very good service
Type 1 = Equipment etc good no real problems
No hub for services
Nurse will respond if needed when call surgery
Other Comments:
Booking appointments Peterborough City - admin errors booked into
wrong appointments laser surgery/gen check up mixed up. Hospital notes
filed under wrong name! So no follow-up appointment given. Hospital
notes marked as being discharged from eye clinic by doctor following appt
- that never actually took place, resulting in extensive laser treatment a
heanorrhage in both eyes.
1973 No support or help - readmitted 10/7 later!
Chasing appointments for regular checks
Would like more frequent foot checks (Podiatrist) used to be seen twice/year
Retinopathy waiting list very long or got to travel further if appt missed or newly
diagnosed - more flexibility needed
Peterborough - having to chase appointments for more regular eye checks (used to give
appointments when you were there.
Hospital food - not seen as a priority for diabetic patients to give you what asked for/
indicated would be provided
Public understanding and judgement
Include partners/family members to encourage you
More info in all areas + ongoing
Support groups
Peterborough PDAC- learnt a lot 21/2 days ( would have liked sooner after diagnosis
Referrals to out of area specialists
most useful - offered through diabetic nurse
Hasn't been offered a course and thinks it would be useful - currently uses guess
More personal responsibility
Everything under one roof - screening, podiatrist, dietician etc - local, fully
Support Groups - not financially viable when paying for a hall (with 5 people) - but
staffed (specialist)
keen to see them happen - more marketing?
More information needed in all areas - not having to travel to see people, sooner
after diagnosis, with other conditions, need more information to be able to manage
Better access to footcare
multiple e.g professional or someone in the same boat.
Option (choice) to see a dietician expert immediately after diagnosis and for it Support groups - hard to get specialist nurse/dr . Hard during working hours. Were
to be a positive experience
very helpful when they used to take place
More understanding of active lifestyle
Outline - Opportunity to share experiences
Not enough information/advice on hypo's etc when first diagnosed.
More research on pancreatic transplants
Refresher Desmond/Daphne Courses
Oakham practice = gave a booklet with info but also could add your own notes/self
Type 2's Especially with 1st diagnosis should be able to test sugar levels to see effect
food has
Specialist nurse from Grantham no knowledge/ relationship with consultants at PSHFT
Better access/education dieticians (access to specialist dieticians)
Reminders to appointments , Text messaging/call etc
Access to wider range of different medication
Access to courses evening and weekends different areas (where yoiur consultant is)
Regular visits to a podiatrist
Diabetes Nurse attitude doesn't know anything about insulin pumps so don't ask
Target sugar levels - changes/ consistency (ex used to be '7' now 40 = self management of
Clinic access generally
Retinopathy van screener in van didn't listen - disregarded patient view - more patient
Psychological support - not there for newly diagnosed people.
Not always been recalled to retinopathy
Lack of education of staff in clinicla settings
Local hospital (+community hosp)
All practices (GP) nurses banding together to run special local clinics and
more of them
Better education for all nurses
Reduced fees for keep fit/exercise
More people trained in insulin pumps so no need to travel
Phone for an appointment and get it straight away
More education for retinopathy screeners
Better access to Psychology services
Ban all food specific for diabetes
A nice consistent blood sugar level, esp if you eat properly
Financial support with new glasses