Question
Stock-out and non-delivery of ARVs in Taunton in the UK
19 September 2014. Related: Access to treatment, Adherence, All topics.
I am a patient at Taunton GUM and we have been having problems with the supply of medicines by “Healthcare At Home Pharmacy”. I have heard from lots of my friends who have had the same problem and some have had to miss doses because health care did not send their drugs on time.
We have complained with the hospital and we feel sorry for the nurses as they spend a lot of time on the phone following up on the orders even if they put in the orders two weeks in advance.
The main pharmacy does not hold or stock any HIV drugs.
Can you advise what I should do next time so I get my supply. I am thinking of changing the clinic, but is this common in all clinics?
Answer
Hi
Thanks for your questions.
The things you report are very worrying. Although homecare delivery services are great when they work well, I have heard of problems in other parts of the country with other companies.
If this has been happening regularly, then it is essential that an emergency access plan is promptly put in place to ensure that no-one needs to break their medication because of delivery problems.
One option that should be easy is to ensure a back up supply of ARVs in the hospital pharmacy. I am shocked that this hasn’t already been put in place.
In London, when similar problems arise, it is easier because hospitals still have people for whom home delivery is not appropriate. Getting an emergency supply is therefore easier. I have heard similar report though where the companies have missed several delivery slots.
Have you written to the hospital and commissioners to formally complain about this problem? If you have a patient forum or local support group they should also be involved. If the problem is ongoing then making this a formal complaint may help.
Although it is too late today (early Friday evening), I will follow this up on Monday and repost additional information when I have it.
I will also try to contact the commissioner responsible for this area of the country and the Taunton clinic for comment. If you are able to tell the clinic that this is now online, it may also speed up their responses to take this more seriously. It may also help if the clinic themselves have are not getting the support they need.
I don’t know whether this is a problem with other clinics that are close to you, but perhaps other people who use these services could post comments or information below.
Another easy solution would be for the hospital to modify the bureaucracy for reordering meds by letting you do this 3-4 weeks in advance. This way you could have a couple of weeks emergency meds at the end of each prescription to cover problems with late delivery.
You could also tell the hospital that you have run out early to get this safety supply.
Hi,
Some weight gain after starting treatment is common. This is because your body is using less energy to fight the virus. Your CD4 count i probably already going up. You will be able to see by how much when you go to the clinic next.
I am on my 3rd bottle of Atroiza …started treatment Jan 2015.
I gained weight from 69kg to 75kg,is this normal,does it mean the ARV’s are active?
And when will my CD4 count go up,it was on 298 when I started?
UPDATE TO THE UPDATE: It appears that no-one at the Trust is able or willing to take responsibility for these changes and so as a courtesy to the Directorate Manager previously mentioned below I have removed his/her name.
We are happy to post a formal statement from the Trust when this is available.
UPDATE: On 9th October I received an email from the Directorate Manager at Musgrove Hospital, Taunton & Somerset NHS Foundation Trust.
This email states that the pharmacy services will be restructured to now stock a supply of ARVs to cover future supply issues at the hospital.
The email refers to a further analysis of cases where ARVs were interrupted and that the people involved will be formally contacted by the hospital. This should include an explanation and apology.
It is unclear whether this has been formally recorded as a serious incident.
If any other patients in the UK have similar problems, or if this occurs again in Taunton, please contact i-Base asap for further advice.
Non-delivery of prescription drugs by a private contractor that results in interrupting HIV treatment would also be a suitable issue to contact your MP about.
Hi
In case anything similar happens in another clinic the people that i-Base contacted outside of your HIV service included the Chief Executive for the hospital (Jo Cubbon) and the lead commissioner for HIV for your region on the South West Specialist Commissioning Group (Selina Riggs).
Although neither of these people have yet answered the email personally, they were cc’d to a group of other leading commissioners, including the lead commissioner responsible for HIV service at Public Health England, so this might have had some effect.
Some staff at Taunton were very helpful and they are clearly frustrated with trying to resolve the issue with Healthcare at Home as a supplier. I don’t think this is their job as responsibility for the service is higher up. I am shocked that this hadn’t been taken more seriously at higher levels. This would also be a reasonable issue to contact your MP about.
Home delivery services – even when this involves picking up meds from the hospital – generally work well but there have also been problems. If these involves occasional delays or changed times this is not good but sometimes might be understandable.
This should NEVER result in someone having to take a break in HIV treatment in the UK. The first time this happened an emergency plan should have been arranged. The treatment break is a red flag for a seriously inappropriate and badly managed service.
If an emergency plan has not yet been arranged, then we will keep this discussion live until we can report that it has.
I think it is reasonable to ask how many times this has happened, how long it has been going on, how many people were forced to stop treatment, and what structures are now in place for it not to happen again. I also would want to know whether anyone who had a treatment interruption had a rebound in viral load or developed drug resistance.
I think it is also reasonable for the hospital to write to individual patients who have been affected in this way to apologise and to write to all patients to explain the new arrangements.
One easy measure would be to formalise an arrangement with Bristol Hospital which does stock HIV meds whenever a patient has been left with less than a minimum safe supply due to non delivery from Healthcare at Home.
Given the history, this should perhaps be a minimum of two weeks supply, but this service specification should be arranged in association with lead commissioners for the area based on recommendations from Public Health England.
While the bureaucracy sorts this out, Bristol is close enough for a courier service to cover this and between hospital invoicing to be arranged. As I understand it, Bristol has not previously been approached for this to happen.
Thanks very much for your endeavours… my drugs since arrived and I noticed an atmosphere at the clinic… somebody has been made aware I think.
I am not brave enough to give you my address but I will answer your questions on the open forum – I hope Taunton GUM accepts that there is a problem which needs fixing now rather than later.
ALSO ITS A GREAT JOB YOU ARE DOING ON THIS FORUM. I KNOW A LOT OF PEOPLE WHO HAVE HAD A GOOD NIGHTS SLEEP AFTER I HAVE ADVISED THEM TO BROWSE YOUR SITE. DONT GIVE UP. We are behind you though in a quite corner.
Thanks – keeping a few weeks buffer supply is one of the easiest things that would help.
In this case it sounds like people already ordered their repeat prescription several weeks in advance and then when they came to the clinic to pick them up, there still wasn’t a supply.
The hospital seem to have been having problems that have been ongoing for months which is very worrying. One commissioner with overall responsibility has contacted me to say they were not aware of the problem. It is essential that these problems do not get stuck in a bottleneck at the centre but get taken higher.
Whatever the problem, this is not acceptable practice for the UK. I hope to post further information later today and during the week.
If anyone else lives in an area where this happens, please contact i-Base, in confidence.
Another alternative, if no change of drugs is expected, is always to keep a month’s supply in hand. I know of one hospital in Wales that insists on this.
Thanks for clarifying this.
This makes the situation even more bizarre and serious. No UK hospital should run short of HIV meds.
That this forced people to take an drug break when a script had been requested weeks in advance is alarming. It is also important that advocacy groups like i-Base hear about this whenever it happens.
I will post an update when I have something. If you are able to post a contact email via the Q&A service it would be helpful to be able to ask you a few clarifying questions. This will be in confidence and you don’t need to give your name if you would prefer not to.
Thanks very much for your response… just to say this is not home delivery… we still have to go to the hospital to collect the drugs… I will be interested to hear the outcome.