1. Dr Sharon Conroy, Mandeep Bhoday and Coral Smith
To determine the extent and nature of problems encountered when children are discharged from hospital on an unlicensed medicine
Dr Sharon Conroy,
Mandeep Bhoday and Coral Smith

2. Acknowledgements Huge thank you to NPPG for funding this project!
Huge thank you to Derby, Nottingham, Sheffield and Leicester pharmacies & paediatric pharmacists for their help!

3. Aims of the study
To explore the experiences of families and healthcare professionals in obtaining or providing further supplies of unlicensed medicines in the community.
To identify potential means to improve current systems.

4. Methods
Hospital pharmacies & ward pharmacists in Derby, Nottingham, Leicester & Sheffield identified prospective participants.
Telephone interviews with parents, GPs, community pharmacists and outreach nurses to discuss experiences & suggestions for improvement or examples of good practice.

5. Results Parents n=60 54 1 N/A 2 withdrew consent 3 unable to contact
interviewed
not yet interviewed
not used
reason for non contact
Parents n=60 54 1
N/A
2 withdrew consent
3 unable to contact CP
n=56 19 7
11 no problems-no follow up
10 opted out
9 no permission
GP n=54 10 2
14 no problems-no follow up
15 opted out
10 no permission
1 problem not chased
1 lost to follow up
Out reach nurses n=2
29 parents had problems with GP,
24 had problems with CP

6. Carer Results (n=54) GP related
GP won’t prescribe until sees hospital paperwork
Poor communication from hospital
GP takes too long to generate prescription
GP won’t put drug on repeat
GP writes different concentrations or formulations each time
Items regularly get missed as has to be hand written
Refusal to prescribe (not on list, cost, Dr not licensed?, too dangerous, lack of info)
Reported no problems or gave positive comments n=24
Poor communication – eg takes time for letter to get from hospital, poor photocopy causing confusion, issue with frequent changing doses due to toxicity but prescription not updated
Time to generate 48 hours for repeat prescription parents running out
Refusal to put onto repeat controlled drug, as hand written. errors on hand written prescriptions reported by two parents one decimal point in wrong place potentially resulting in a 10 fold error other ‘regularly misses off items’.
No problems reported positive comments –
Prescribed licensed alternative
Hospital letter always arrives on time
Dr checks doses with mum if problems discusses with specialists
Any changes to medicine are quickly dealt with
Has on repeat no problems
Hospital ward pharmacist wrote down all details of the drug process has been a breeze
GP very good, mum presumed due to good communication between hospital and GP

7. Carers results n=54 Community Pharmacist related
Supplier issues (product appearance, delays)
Wastage (big bottles, short shelf life)
Can’t provide so parent has to return to hospital
Takes long time to supply prescription
Will not order without seeing prescription
Refused to supply
No problems / Positive experience n=22
Parent needed to return to hospital as CP can’t provide – no prescription n=2, can’t supply quick enough n=3 (2 breakages needed same day, 1 parent didn’t know it would take two weeks to dispense), can’t provide n=3
Positive remarks –
Good communication between gp/cp n=1
Orders in advance cp n=1
Parent lets cp know when need new prescription who orders, collects and delivers medicine n=1
Cp contacted supplier to see if shelf life could be extended – positive result n=1
Hospital provided drug info n=2
If cp can’t get drug can contact hospital pharm or neonatal family officer n=1
Been fantastic cp collects prescriptions and has ready for mum to pick up n=2
Time ready in 48 hours n=1
Happy with service n=1
No problems as long as parent orders on time n=1
No difference in time frame to ordering licensed meds n=1
Have bent over backwards to ensure no loss of supply to child n=1
Initial problem but pharmacist is amazing
When could get med phoned around and even once delivered to house when late n=1
Good working relationship parent/cp good communication solves any problems n=1
No proibs n=1
Pharmacy always got what needed n=1

8. GP Results (n=10) Communication issues from hospital – delays, unclear
Need to hand write prescriptions (if not on system, CDs)
Prescribing issues – parents not requesting early enough
Amending computer product list
Legal implications
Cost
Communication problems
Hospital had not arrange their usual MDT meeting
Discharge letter had been sent to a named person who was currently away
Poor communication from secondary care – long delays in receiving paperwork
PM disputed paperwork taking 6-8 weeks to arrive and were acted on immediately
Clear communication needed from secondary care
Secondary care are not always aware of shared care protocols
Had to ring hospital to find out what strength to dispense
Will not prescribe until all information available causing delays for families
Hand written prescriptions
When drugs not on the system
For controlled drugs
Cannot be put on repeat if hand written
Repeat presciptions
ACE inhibitors are often titrated up so not put on repeat prescriptions straight away.
Normally repeat prescriptions are for two months however as it was an unlicenced medicine the patient would need more monitoring.
Prescribing issues
Takes 2 days to generate a prescription unless patient says urgent
Gp pharmacist tells parents it will take a few days to order specials thus need to order in time
Asks parent to bring in the bottle dispensed so that the same strength is dispensed helps to reduce errors
Product list
Specials (individual drug or strengths) don’t appear on product list if it hasn’t been dispensed before and only a few people can add to this list
legal implications
There is legal implications for the doctor when prescribing medicines thus it is up to the individual doctor.
Cost
Cost is a concern if there is limited clinical evidence/value of UL products,
will always try to prescribe a cheaper alternative
Missed items
Is not the responsibility of just one individual GP to sort out prescriptions, the responsibility is shared. Therefore, cannot comment if other GPs have mistakenly missed items off in the past.
Current practice
Working in partnership, regularly review prescriptions with team including attached pharmacist to ensure safety.
Shared care protocols outlines the responsibility for the specialist and GP concerning prescribing and monitoring.
PCT pharmacist, each practice in derby has a PCT pharmacist attached. They use the multiplex drug file which they are able to update with new drug or information this includes what strengths individual hospitals dispense.

9. GP suggestions for improvement
Improved communication
Hospital to GP
Timely, comprehensive (drug, dose, strength, indication, monitoring instructions)
Not just letter – phone call to warn them
Parent to GP
Preference for hospital to continue supply
  Preference for hospital to continue supply
More familiar with prescribing, obtaining and monitoring specials
Should liaise with local hospitals if tertiary care to far away
Safer for patient, GP happy to prescribe once have full written information containing the clinical indication
Improved communication - Hospital to GP
- Consistent communication and prompt summaries;
Written information to arrive before the patient in-order that any problems can be resolved early;
to include drug and dose;
to include strength as well as dose to prevent drug errors when parents continue to give a similar volume;
to include clinical indication, clear instructions on shared care guidelines and monitoring will not prescribe drug until all info is there, causes delays whilst hospitals are chased
It should be more than just letters
Telephone call from consultant or hospital pharmacist to pre-warn surgery of pending special and to provide them with an opportunity to ask questions on safety
Improved Communication - Parent to GP
- Parents responsibility to bring in information received from hospital n=1
Good practice  
- Practice manager would take the issue of timing of reordering of repeat prescriptions for unlicensed medicines to the board to try and improve the patients experience

10. Community Pharmacist Results (n=19)
Ordering in advance
need to see prescription first, cost issues, short shelf lives
Lack of communication
from GPs, hospitals, and parents
no info in advance of prescription arriving
difficult to contact correct person
parents not warned these medicines take time to obtain
GP related issues
not prescribing enough
failure to write authorisation forms e.g. melatonin
Communication
Difficult to get hold of GP’s and or hospital doctors n=2
No communication prior to prescription been handed in n=2
No info on which hospital or consultant involved n=1
Parents aren’t told that specials take longer to dispense n=4
Hospitals should encourage parents to bring dr notes in so CP can copy them and get a headstart on ordering medicines n=1
Slow communication between hospital and Gp. N=1
Ordering in advance
Can’t order too far in advance due to short half life n=2
Need to see prescription first due to cost n=1
Can’t order in advance as would be expensive if patient no longer needed it n=4
Regular staff may order in advance once get to know families n=2
Could order in advance if Gp guaranteed patient on it for some time n=1
Time to dispense
Takes variable time to arrive from supplier n=4
Not aware of drug so took time to sort things out n=1
Does not take 3 weeks to dispense n=1
GP related issues
Not prescribing enough to last n=1
Concentration changed child wouldn’t take increased volume n=1
GP’s have an automated system if it is not licensed it will not be listed n=1
GP need to produce an authorisation declaration n=1 -
GPs need to produce an authorisation form/ declaration to say that are aware they have prescribed an UL medicine and the reason why it has been prescribed. GPs often do not do this which causes delays as the supplier will not provide the medicine until this has been received. This frequently happens with melatonin prescriptions
CP initiated solutions
Found suppliers who could deliver quicker n=3
Rang supplier to get a flavoured medicine n=1
Contacted supplier to get formula and expiry to make it up in pharmacy if required in case of emergency n=1
Ringing around local hospitals to track down where patient was treated and with what product n=1
Always chase up medicines to make life easier for parents n=1
Use 2 methods to supplying direct from manufacturer and from a 3rd party n=1
Parent initiated solution
Tells pharmacy staff that prescription is special so they know to order
Current practice
Asks parents to bring in / request prescription early n=2
Notes on patients records to flag up different formulations, allergies and drug preferences n=2
Having regular contact with both parents and specialist to ensure correct doses n=1
Having a reliable specials supplier n=5
Use of prescription collection service n=2
Bypassing the system and calling manufacturers directly n=1
Head office do all research and orders drugs n=3
CP awareness
A lot of CPs do not know where to start or who to try and send patients away without even ringing the hospitals, suppliers or other pharmacies n=1
Sometimes cannot find a manufacturer who they can order from and in this case they would have to send the parents somewhere else n=1
Other comments
Have no problems in supplying specials n=3
Pharmacy always happy to go that extra mile for the patient n=1

11. Community Pharmacist suggestions for improvement
Improved communication to pharmacist
Copy of discharge letter faxed in timely manner
Hospital pharmacist to contact them to warn them & advise on where to order from
Contact details of hospital pharmacist
Improved communication to GP’s from hospitals
Hospitals to provide adequate supplies
Better education
Parents and GP’s to be made aware of time it takes to obtain
Suggestions for improvement
Better communication to pharmacist
Discharged letters to be faxed in a timely manner n=1
Copy of discharge letter sent to pharmacist in-order to check prescription n=3
Letter or phone call from hospital pharmacy explaining how to make medicine or where to order from to include contact details n=3
If knew in advance could contact parents to find out when next supply needed n=1 or find out where to order it from n=1
Leaflet about unlicensed medicine n=1
Adequate hospital supply
Enough to cover time to generate and prescribe prescription n=2 (suggestion of two weeks for a special)
Education
Parents should be educated about the time to get special medicines and told to order early n=2
Gps do not always appreciate that some medicines need to be specially made or ordered n=1

12. Problem drugs Getting from GP Getting from CP Captopril n=2
Phenobarbital n=2
Sodium bicarbonate n=2
Omeprazole n=1
Sodium chloride n=1
Enoximone n=1
Furosemide n=1
Spironolactone n=1
Chloral hydrate n=1
Phenytoin n=1
Glycopyrronium n=1
Vitamin D3 n=1
Hydrocortisone n=1
Omeprazole n= 4
Spironolactone n= 3
Captopril n=2
Sildenafil n=2
Furosemide n=2
Hydrochlorothiazide n=1
Clobazam n=1
Sodium chloride n=1
Enoximone n=1
Rinexin n=1
Metolazone n=1
Azathioprine n=1
Warfarin n=1
Lisinopril n=1 

13. Summary Key message for us
Improve communication from secondary care to GPs and CPs
Timely
Comprehensive
Clear
Provide advice on strengths, suppliers etc

14. Any Questions?