This is specifically for any NHS patients in Scotland.
I had a stem cell transplant in august and was given a vaccine schedule that was forwarded to the vaccine team in NHS Grampian. Was due a covid jab in November and a covid + flu in December. Have had no contact from vacs team. GP surgery refuse to get involved and nurse specialist at haematology can only send on emails. Vacs team are uncontactable by general public. Proactively booked and get a covid jab through the public portal for November and then booked again for flu & covid in December but was refused the second covid jab. Was advised I can’t go through the public portal. Have another 4 jabs due start of feb and wondering how easy that will be to get.
Anyone has a similar or different experience and found a way to get through this?
Hi @Sentinal,
A very warm welcome to our forum. I am super pleased you have found us and i hope you find some really good support within our community.
Please do also know that if you would prefer to talk things through our support line can be contacted at anytime- Blood cancer information and support by phone and email | Blood Cancer UK
I am so sorry you have had this trouble. It certainly has been an area of difficulty we find from time to time for post transplant patients across the UK. So please do know you are not alone in trying to organise your vaccines, but none the less we appreciate this is far from ideal.
It is great that you were given a vaccine schedule. However not so great if it wasn’t well received.
Can i ask, were the vaccine team able to offer any explanation to why you couldn’t receive your 2nd dose?
Are you potentially able re visit the vaccine centre armed with all your letters in order to speak with the centre manager?- Vaccination Centres | Vax Grampian (grampianvax.com)
As you are likely fully aware, it is typical that vaccines need to be given 3 months apart, but post transplant can have exception to the rule with primary boosters typically recommended on an 8 weekly basis.
So i wonder if perhaps the vaccinator was not fully aware of the post transplant specific guidance and this may need to be escalated & reiterated within the centre.
Can i ask, do you have a transplant cns/ team that might be able to help you further with this?
In case it is useful in any way, I have linked below to some guidance around this from Anthony Nolan-COVID-19 vaccines for stem cell transplant patients | Anthony Nolan.
Within this link there is also a templated letter which your haem or transplant cns can complete for the attention of your GP, which may help in trying to rearrange this.
I wonder also, if it would be of any use in contacting the vaccine helpline in Scotland- 0800 030 8013.
Again i am very sorry this is causing you difficulty and and appreciate how frustrating this must feel. So please do call our helpline if you feel we can talk things through for the best next steps.
Take Care, Lauran
My vaccine schedule was forwarded to the Aberdeen vacs team (NHS Grampian have multiple area teams). This was then resent when I had no response by October. I then booked myself via the public portal for November and subsequently was given a booster despite advising of STC and showing the vac schedule. I then booked again for November. Visiting in nov there notes advised min 8 weeks gap and no advice was available on site online via a phone call to escalate. This escalation was unable to clarify the situation and there concerns trumped the consultants schedule.
I did get a call back from an Aberdeenshire team leader/manager who advised that I was given a boosted vac and should have been given a primary dose and I can,t book or visit but must be requested via healthcare professional. This is confirmed by the Grampian vax website where the relevant page is only accessible to a healthcare professional on a Grampian NHS device. There are no decision capable staff at the various sites and the vac team that can sort it out are in a non public office at a separate site that can’t be contacted other than a secret internal email. Was given a phone number by the nhs board complaints team today but the number is out of date so they have dropped the vac team an email.
Think this can be resolved with a quick conversation but needs some local or insider knowledge to find the right contact to resolve. Very curious to see if this is a one off or if others in the area or having or will have the same issues.
Forgot to add, I do have a Macmillan nurse specialist that has sends the vas schedule to the vacs team 3 times so far but don’t think there is much more she can do. I do know that my schedule was recorded in the “vacs system” in October after the 2nd email so they do at least know I exist
Hi @Sentinal,
Thanks so much for explaining this. I appreciate it can be somewhat more difficult to note everything on written form. So please do feel free to give us a call on our helpline if you do wish to run things through with us- 0808 2080 888.
Again i am so sorry your having this difficulty. We will ensure that we continue to feedback the difficulties our community are facing with regards to re-vaccination post transplant as this really has been a real struggle for many since the beginning of the pandemic across a variety of NHS trusts and nations.
It sounds like you have been really proactive & already tried to access help through lots of different channels.
I also have everything crossed that by contacting the correct person it will be easily resolved.
In case its helpful to know- We have received feedback that in some cases by completing and using the 2 x Anthony Nolan documents, vaccine centres have accepted the schedule and held responsibility for the subsequent doses.
So i wonder if this, as it has attached greenbook guidance would be another step to try.
1.Document to be filled out by the patient’s Transplant Centre Clinician
2.Guidance geared towards HCPs but also useful for patients
Please keep us updated and again feel free to call us at any point.
Take Care, Lauran
Further update today. Called the nhs board board complaint number again today and after an apology that the complaint team hadn’t done as they had promised on Monday eventually had a call from a nurse on the vacs team.
Booked in for covid vax tomorrow and will book my next tranche of jabs at the same time.
Confident I will not have any further issues personally but still want to get to the bottom of how this process should have worked and why it didn’t and see if we can make this a smoother and less stressful process for others.