The forgotten half million?

[quanglewangle]

We went from Shielding to being High Risk to being Vulnerable. Are we now the Forgotten?

I ask, because we were told that the Autumn vaccination programme was starting on 18th September, and I started to hear of people getting appointments and inoculations but from my knowledge of their condition and status it is clearly random - and not targeted.

Today I received my appointment email couched in very general non-specific terms about Flu/ Covid eligibility ....

" You may be eligible for both the flu and the COVID-19 vaccines, or only the flu vaccine. "

And my appointment is for 31st October - so very untargeted.

BTW - the appointment email gives a link so that you can re-arrange if the appointment is inconvenient, so, thinking I might be able to find an earlier slot I clicked through - only to find that NO appointment slots exist....

Perhaps Blood Cancer Awareness Month has not filtered through to NHS Scotland !!

[quanglewangle]

Hi

After my little rant I just re-read the MPN summary about the Autumn programme

healthunlocked.com/mpnvoice...

And while I am still confused I still feel that it is odd that people like me (79/MPN/immunosuppressed/other health deficits) are being left to last. I am active and not in a Care Home but why are people that are in Care Homes being left until last? (remember what happened when Covid first arrived?)

[AndyT in reply to quanglewangle]

In England care home residents were first in line, from 11/9, and then over 65s and other higher risk groups from 18/9.

I booked my and my wife’s Covid jabs last week on the NHS website with just a couple of days’ notice. They didn’t yet have flu vaccine in stock but we got that later the same day from a local chemist.

It’s worth looking pro-actively for appointments rather than waiting for the invite/appointment to come through.

[Ebot]

Hi. I’m in England and had my Covid jab last week and will get flu this week - solely on the grounds of having a blood cancer and being on Hydroxy. (I’m not even sure the Hydroxy is a thing any more.) My other half and my teenager also got both their Covid and flu jabs on account of living with me. I just walked into my local pharmacy that offers a vaccination service. Certainly everyone over 65 that I know who wants their jabs has had them.

Maybe it is just a Scottish thing???? Though I’m not sure what has made you think all care home residents are being left until last. I saw there’d been some admin screw up in one of the regions with vulnerable patients beings told they were only eligible for the flu vaccine but that has been rectified. A call to the vaccine helpline???

[quanglewangle in reply to Ebot]

This is what MPN Voice link shows.... Maybe it is incorrectly worded but - at 79 /MPN/Hydroxy suppressed/and other underlying conditions - I fall into the final "all other groups" hence my 31/10/23 appointment .

Scotland – Over 50s will receive a flu jab in Scotland, compared to only over 65s in England. (that's me). Flu jabs for 50-64-year-olds will start from 4 September. (that's not me)People aged 65-74 years of age with no underlying conditions (that's not me) and those aged 12-64 years in a clinical risk group (that's not me) (excluding those with a weakened immune system) (that's me), will be invited for both jabs, with appointments starting from 18 September (that's not me). All other groups will follow from mid-October (that leaves the over 74s until last including me and importantly care home residents). People should wait to be invited or prompted to book their jab(s) by NHS Scotland.

[Ebot in reply to quanglewangle]

I just checked the Scot Gov advice and they are following the JCVI guidelines. Much of the advice above applies only to the flu jab. This is the advice for the Covid jab (and these people are automatically eligible for the flu jab as well):

“The JCVI recommends that people have the COVID-19 vaccine this year if they are:

residents and staff in care homes for older adults

aged 65 and over

aged 6 months and over with a condition that places them at higher risk

pregnant

carers aged 16 and over

aged 12 and over who are household contacts of people with a weakened immune system

frontline health and social care workers”

Definitely worth checking with the helpline to see if you can move the appointment sooner. Or call your haem department. May simply be a logistical reality (or indeed screw up).

[quanglewangle in reply to Ebot]

That confirms eligibility but not timing

[Ebot in reply to quanglewangle]

True. I read somewhere that they are hoping to complete something like 80 per cent of vaccinations by December. Seems like England has the edge here. So sorry. (Mind you I tried to get hold of an ambulance in Edinburgh the other week - for a young woman who had collapsed, appeared to have hit her head as she went down and was vomiting - but was told ‘we don’t send an ambulance for that sort of thing’. Ah well. Sign of the times.)

[Aldebaran25]

I am in England and had the covid jab on Friday. I received a message from the NHS and booked conveniently at my local pharmacy with no wait. All very efficiently done through the NHS app. The flu jab was also available (I will go back for that later, giving a break between the two). My husband (over 65) also had his covid jab, as well as my mother in-law, living in assisted accommodation. Maybe it is a Scottish thing as Ebot suggested.

[Nickthedevil]

if you Google covid vaccination booking it will take you to the NHS/gov booking site. You can book an appointment that way. I did it yesterday and got an appointment for today. Good luck

[quanglewangle in reply to Nickthedevil]

Thanks to everyone for pointing out that NHS England system apparently works.

I logged in to NHS Scotland to try to arrange an earlier slot but "No appointments available" so I'm still on course for 31/10/23.....

[Nickthedevil in reply to quanglewangle]

Apologies but I didn’t pick up from your original post that you were in Scotland

[quanglewangle]

P . S.

NHS Scotland appointments web-page says

If you require additional support please contact the National Covid Helpline on 0800 030 80 13

tried this..... CLOSED!!

Still looking forward to 31/10/23.

N B my wife who lives with me has not even got an appointment yet - maybe next year!!!!

[AlyW]

Morning all!

I’ve received my Covid Autumn booster today- I didn’t receive any notification from NHS app or GP ( as I have before) so decided to be pro-active and easily booked in on NHS site.

[quanglewangle]

Oh to be in England now that Covid jabs are here....!!! (apologies to Robert Browning)

[DJK12]

I noticed too that rather oddly Scotland seemed to be leaving the over 75s and immunosuppressed until later in October. Then I read elsewhere (not on NHS Inform) that this was because they are worried the peak infection time will be December/ January and the September vaccines by then would be wearing off hence doing the more vulnerable later. However then there seemed, in England particularly, to be a scramble to get all done earlier because of this new variant. Personally as I live in Edinburgh and there was wide publicity that we had the highest figures in the UK (possibly because of the Festival) I decided not to wait for a letter and unlike you was able to book appointments for both of us and we had them on Friday. It was very very busy and I saw a lot of people with letters but we weren't asked for one - my online booking had worked.

The booking site didn't give me an option to say I was immunosuppressed and booked me under the 65-75 group.

All I can suggest is you check the booking site daily but it certainly doesn't seem to be a level playing field across Scotland from your experience.

[Phantasia]

So in the UK does having a MPN automatically mean you are eligible for Covid boosters and Paxlovid that are outside normal eligibility requirements?

[quanglewangle in reply to Phantasia]

Yes - though not quite sure what 'outside normal eligibility requirements' means. Criteria may be different in Australia I guess.

[Phantasia in reply to quanglewangle]

Outside of the general population as in age criteria eligibility.

I just wondered because when I asked my haematologist if I'd be eligible for an additional booster shot she said no because essential thrombocythaemia isn't considered an "active" cancer. That seems to be the criteria here.

I also couldn't access Paxlovid back in March when I had Covid based on the same criteria I assume. It wasn't on my GP's list of qualifying conditions.

Aside from aspirin I'm not on meds so that may have been factored in as well.

Interesting how eligibility criteria from country to country changes. On the plus side at least in Australia, for now, boosters are available to all adults regardless of health issues.

Thanks for answering.

[quanglewangle in reply to Phantasia]

Certainly the WHO define MPNs as cancer but when Covid arrived some people found a lack of awareness of this fact and it took a while before we could be added to the Shielding/High Risk groups. Analysis of MPN medicated groups found low immunity response to vaccinations and infections so many of us are still immonosupressed and vulnerable. Here in UK we are part of the 'Forgotten half million' that continue to take precautions and restrict social interaction.

You should find plenty of info relevant to you at

Leukemia Foundation National Strategic Action Plan for Blood Cancer -

leukaemia.org.au/blood-canc...

or these may be helpful

cancerresearchuk.org/about-...

and

bloodcancer.org.uk/

Bye

[JabON]

I haven't waited for contact from my GP re Covid vaccine. Each time a vaccine dose is available I have gone to the NHS website and booked . I found that more pharmacies are added daily as its up to them when they can offer the vaccine due to staffing . So keep looking. I had my vaccine on Saturday. My flu vaccine via the GP is still a couple of weeks away.

[quanglewangle in reply to JabON]

If you reread the thread you will see that I am in Scotland and it seems that although eligibility is the same as in England, NHS Scotland are adopting a different approach to timing of the vaccinations. It also seems that Dumfries & Galloway have less appointment slots available as there is no opportunity to reschedule here.

[Wyebird]

I had a text saying I was vulnerable. I’ve had flu jab but I’m always ill with covid jab and can’t afford to be because hubby is poorly.