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NHS ' broken ' in my area of Bucks


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20 days ago I suffered an unexpected  severe adverse reaction to the AZ vaccine. Please be gentle in replies as this may be just a local problem and I am still suffering 

My GP surgery is so overwhelmed by telephone calls that it takes 40 mins to 1 hour to get through. They have had to get extra staff or lost their original staff as they are telling me that they are new and untrained (and that is not me asking).

The GP has set up a nurse triage system to deal with vaccine adverse reactions. It too 72 hours for them to return my call. They were untrained in this area and unable to help in any meaningful way.

It is not possible to make an appointment to see or talk to a doctor online. That part of the system has been removed and replace by an add-on that is hard to use and in my case usually refers me to 111 or A&E. There is no email access.

The clinic practise manager will not take calls or return them.

My local A&E told me on my first attempt to visit that this was not their problem. I as refused access to a doctor or any investigations apart from a Covid test (which was clear). I was told that 'a lot' if people were developing Covid after their vaccine or reporting symptoms.

The 111 system offered to send an ambulance to monitor my vital signs but that was all. I could see from using my husband's exercise devices that my oxygen sat levels and HR levels were dropping so declined as pointless.  The ambulance staff would have merely taken a reading and gone.  111 offered to use a 'special line' they had to my GP and call me back. The last part at least didn't happen.

After being turned away from A&E I phoned the hospitals PALS service. They were to find out who could deal with this and come back to me. This didn't happen. A message to them the following day was not returned.

I finally have a 10 minute call booked with a duty doctor at my GP on Saturday. There are no home visits, or physical examinations  or Zooms or actual face to face visits at all.

We did make it back to A&E again but that may need another post as too tired to write more.

 

 

 

Edited by Flopsy
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There are more people having fears and anxiety about all sorts of things, the things we need and expect to live a life feeling supported and secure, knowing that there is a safety net and a cure or procedure for ailments and pain.......most people just need someone to reassure them, to say all will be well...... unfortunately often there is nothing that can be done, no magic pill or potion that will put it right..... statistics are useful, we are the statistics......both nature and nurture are the causes and effects, the mind is very powerful when it comes to our own individual way of keeping both body and mind heathy......how we think, our hopes and fears do make a difference....... mindfulness is becoming increasingly important when trying to help ourselves when the support networks we have taken for granted in the past are and do fail.;)

Edited by winkie
Clarity
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On 02/04/2021 at 13:51, Flopsy said:

20 days ago I suffered an unexpected  severe adverse reaction to the AZ vaccine. Please be gentle in replies as this may be just a local problem and I am still suffering

I take it you'd rather not say what the reaction was and how you are still suffering?

On 02/04/2021 at 13:51, Flopsy said:

My local A&E told me on my first attempt to visit that this was not their problem. I as refused access to a doctor or any investigations apart from a Covid test (which was clear).

As someone who looks at adverse vaccine reactions (much to the annoyance of some on here.....for some reason), your experience with healthcare afterwards is not uncommon. I have read many accounts of people who suffer after vaccination who are then ignored by health services.

On 02/04/2021 at 13:51, Flopsy said:

I was told that 'a lot' if people were developing Covid after their vaccine or reporting symptoms.

That is interesting.

Edited by Arpeggio
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Sorry not to have replied. I didn't know what to say. I was too weak, sick and in pain to think at times 

After 2 visits to A&E. One to a locum after hours GP and then spending a day in a hospital ward I am making progress.

Accused of being an Anti-vaxer and imaging my symptoms. Discovered A&E did not know about the rare blood clotting problem being reported i.e. advising people with certain problems such as headaches for more than 4 days to seek medical help. It wasn't the problem I had but it was useful in getting treatment on the end as the GP insisted they look at my symptoms.

There were two specific other problems found which I would rather not elaborate on.  Totally unexpected and new to me. Both came on within 12 hours of the vaccine (plus the more commonly reported side effects)

Drugs now being tried. Maybe other action needed.

I am very lucky that the final GP listened and was prepared to examine me and then knew who to refer me to. Also that the second hospital doctor took the time when I got there. Very lucky I was well enough to argue my case and be prepared. 

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You've had a torrid time of it. Can you think of anything that might have triggered these symptoms, other than the vaccine of course? I've heard, anecdotally, that if you already have antibodies present then side effects are more likely, but not to the extent that you have had.

Both my partner and I have had 2x AZ jabs now, I'm 60 and have an underlying condition, she works closely with GP's across the country, with literally no side effects whatsoever. Discussions my partner has had with practitioners tells a much different story with regards to the side effects, or rather the lack of them, in their patient base. The worst she has heard of was a suspected blood clot (pains across the back of the rib cage and shortness of breath) but the symptoms had basically cleared by the time the patient had a scan at the local hospital.

The worst 'common' side effect appears to be up to 3 days of flu-like symptoms, but again, the incidence rate is pretty low.

Hope you get over this soon.

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Posted (edited)
1 hour ago, PeanutButter said:

For a start your surgery sounds in a shambles. Is it normally like this or is it due to vaccine reactions?

 

 

No  this is unusual and started when the mass vaccine program began there.  Losing the facility to book an appointment online was the first hint. They added a terrible front end to the website that is like long and complicated form which is supposed to be responded to by the clinic instead.

The waits of up to a hour to get through on the phone which was everyday.  I was typically 16 on the Q.

It is as if the clinic has been taken over to do the vaccine and all the normal NHS care been farmed out to a call centre who are not trained  one nurse to deal with Covid queries and one duty GP. With the hospital A&E expected to see anyone who needs care in person.

As opposed to half a dozen GPS in their offices plus the same number of nurses plus office and telephone staff

It's as if they have all vanished.

Edited by Flopsy
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46 minutes ago, Flopsy said:

It is as if the clinic has been taken over to do the vaccine and all the normal NHS care been farmed out to a call centre, one nurse to deal with Covid queries and one duty GP. With the hospital A&E expected to see anyone who needs care in person.

Can you get hold of the practice manager? It's not good enough, so I'm afraid you will have to badger them and make a noise until they find you so irritating it rises to the top of the to-do list. 

https://www.citizensadvice.org.uk/health/nhs-and-social-care-complaints/nhs-complaints-who-is-your-complaint-against/complaints-about-gps/

 

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Posted (edited)
5 hours ago, PeanutButter said:

Can you get hold of the practice manager? It's not good enough, so I'm afraid you will have to badger them and make a noise until they find you so irritating it rises to the top of the to-do list. 

https://www.citizensadvice.org.uk/health/nhs-and-social-care-complaints/nhs-complaints-who-is-your-complaint-against/complaints-about-gps/

 

Thank you.

I asked to speak to the Practice Manager last Tuesday (the 30th) and was told that they were not taking calls and were refusing to deal with complaints at all.  Asked to leave a message for them to call me anyway and that's gone unanswered. 

I also tried PALS at the hospital I was seen at (A&E) and raised a complaint with them on Wednesday. They were supposed to be finding out which medical team I should be seeing and calling me back that day. Didn't happen and a call to them again today has gone unreturned.

PALS told be to ring 111.  Which I did. They told me they would talk to my GP on some special "hot line" they had.

Tried the local CCG also on Wednesday and was told that they would only deal with email complaints and would take about 5 working days to respond.

Will try NHS England. 

The immediate heat is off as my physical problem is being helped with the new drugs so at least can think better now. 

Edited by Flopsy
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This sort of thing rubs me the wrong way, frankly. Mainly because while you may be over the worst, there will be any number of other people suffering needlessly because their health concerns aren't deemed important enough by the system. As someone whose parent was waved off by a dismissive GP, and subsequently died 3 years later from a cancer that would have responded to treatment had it been taken seriously when first raised, I dislike any form of patient suppression - which is what this constitutes. 

If you do pursue, remember to take names and numbers of anyone promising call backs etc. Hiding behind anonymity makes shirking responsibility far easier. 

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  • 1 month later...
Posted (edited)

Just an update to say what has happened since then. I'm still suffering the strange, unexpected reaction(s) to the AZ vaccine.  Since then I have tried different angles to try and tackle this problem. 

My GP clinic still remains as a centre for the Vaccine rollout. Appointments are very rare. There are no home visits for bed bound or the elderly who cannot leave their home. No district nurse visits. All appointments are by phone but often after a triage by a nurse and then another long wait to talk to a doctor (i.e. 5 -10 days ).

I've tried requesting appointments to see or talk to my GP or any GP on the phone (still takes 40 -60 mins) to get through or their new online Triage system. Managed one in the last month. It was short and fruitless. Another planned for this week and I am ready with a list of suggestions. 

The local hospital is still operating under Covid measure so no visitors allowed and that includes my partner pushing me in a wheelchair. This causes a problem as I get worn out and unable to speak. The staff are overwhelmed and burned out as a guess. There has been pressure to try and deflect what has happened to me away from being caused by the vaccine. A lot of "symptoms may be triggered but not caused" which is a distinction I cannot understand and they cannot reply to. They did come up with a working theory and some medication to trial but I am told my care rests solely with my GP now and their idea didn't work.

There is no access to Specialist staff like a neurologist and very long waiting lists to see any consultants like that. My usual  consultant (out of town and at another hospital) is booking for next year. A private appointment would be available in October if urgent.

The PALS service does not respond to phone calls and replies to emails are very slow. I've yet to have any feedback to my first complaint about the A&E visit where they refused to let me see a doctor and said I had been reading too much on the internet. This was the nurse who did not know about the AZ blood clotting problem. A complaint regarding the subsequent lack of service has not been replied to as yet. 

My local CCG (what used to be the PCT) has a vaccine "helpline" who at least answers the phone but has been told to give out an email address for complaints and queries. No answer from that and at the CCG they refuse to let me speak to anyone about the lack of service(s)  and my emails are not answered. 

The Yellow card system  investigating anything or the MHRA  i.e. figures are being collected but no further medical comment or interest. Emails not answered. 

I have been told every step of the way that the NHS at least in my area has no responsibility or interest in adverse vaccine symptoms and as time goes by I will need to wait and see a consultant which may be a year or more. 

 

Edited by Flopsy
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Thank you Will for asking. I didn't want to bore anyone with the details

This was the list I wrote to report the first Yellow card (minus a few really embarrassing things)

New severe headache, stiff neck, light and noise intolerance (sets off vomiting and headache increases). Headache thumping, piercing. Painful scalp, ears and teeth.  Non stop and not controlled by OTC drugs. Codeine can knock me out but pain wakes me up

Dead, numb legs (unable to stand on the day after the vaccine) followed by weak limbs, no stamina. When could stand and tried to walk like dragging weights. Falling over. 

Pain, stabbing in lower right abdomen/ pelvis

Pain and burning in spine. Restless legs 

Nausea, vomiting and diarrhoea 

Loss of sense of smell and taste 

Swollen glands and sore throat 

Difficulty swallowing and drinking 

Cold sores and large angry red painful lumps (rash) on face and torso

 

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2 hours ago, Flopsy said:

Thank you Will for asking. I didn't want to bore anyone with the details

This was the list I wrote to report the first Yellow card (minus a few really embarrassing things)

New severe headache, stiff neck, light and noise intolerance (sets off vomiting and headache increases). Headache thumping, piercing. Painful scalp, ears and teeth.  Non stop and not controlled by OTC drugs. Codeine can knock me out but pain wakes me up

Dead, numb legs (unable to stand on the day after the vaccine) followed by weak limbs, no stamina. When could stand and tried to walk like dragging weights. Falling over. 

Pain, stabbing in lower right abdomen/ pelvis

Pain and burning in spine. Restless legs 

Nausea, vomiting and diarrhoea 

Loss of sense of smell and taste 

Swollen glands and sore throat 

Difficulty swallowing and drinking 

Cold sores and large angry red painful lumps (rash) on face and torso

 

some of those sound more like an allergic reaction than side effects? e.g unable to swallow (did your throat swell?)

Have you been told to avoid the second dose? I have no medical qualifications, so please don't take that to mean you should not have it - but I think you should check with a doctor, if you did not already? I know someone who had severe kidney pain and was told not to have the second dose in A&E.

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20 hours ago, Flopsy said:

A lot of "symptoms may be triggered but not caused" which is a distinction I cannot understand and they cannot reply to.

They are saying that the vaccine "triggered" something that was already latent within you. It's the next best excuse from saying it didn't cause anything.

20 hours ago, Flopsy said:

I have been told every step of the way that the NHS at least in my area has no responsibility or interest in adverse vaccine symptoms and as time goes by I will need to wait and see a consultant which may be a year or more.

Given the legal immunity given for the vaccines, in terms of culpability, you may be dealing with the lower part of the pecking order least protected in these terms.

Helping you may be tantamount to conceding that the vaccine has harmed you, thus potentially putting them in harms way. It is one of the types of defensive medicine.

https://www.sciencedirect.com/topics/medicine-and-dentistry/defensive-medicine

 

58 minutes ago, MancTom said:

some of those sound more like an allergic reaction than side effects? e.g unable to swallow (did your throat swell?)

Have you been told to avoid the second dose? I have no medical qualifications, so please don't take that to mean you should not have it - but I think you should check with a doctor, if you did not already? I know someone who had severe kidney pain and was told not to have the second dose in A&E.

b105196a71c8837933d569fcd46cee5bdc33b6d6.jpg&f=1&nofb=1

Try and see how Yellow Card system responds?

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Posted (edited)
On 11/05/2021 at 12:45, MancTom said:

some of those sound more like an allergic reaction than side effects? e.g unable to swallow (did your throat swell?)

Have you been told to avoid the second dose? I have no medical qualifications, so please don't take that to mean you should not have it - but I think you should check with a doctor, if you did not already? I know someone who had severe kidney pain and was told not to have the second dose in A&E.

Thank you. A few things are looking like an allergy.  Fortunately for me that part only lasted for the first few weeks (the bad problems swallowing). My throat is back to normal again. My glands are still swollen.  On my second visit to A&E no one touched me again or looked in my throat. 

I've tried to talk to my GP and find out who locally in my area deals with this. No one. I had my phone call with him now and he doesn't think I should have the 2nd before this "all calms down". 

If I want to see an Immunologist or a Neurologist he says that the waiting list will be long. It's now down to the severe head pain which is now radiating down into my teeth, ears and jaw.  The light and sound intolerance. General muscle weakness and other things. My sense of smell and taste are still now back. It's weird.

 

Edited by Flopsy
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On 11/05/2021 at 13:49, Arpeggio said:

They are saying that the vaccine "triggered" something that was already latent within you. It's the next best excuse from saying it didn't cause anything.

Given the legal immunity given for the vaccines, in terms of culpability, you may be dealing with the lower part of the pecking order least protected in these terms.

Helping you may be tantamount to conceding that the vaccine has harmed you, thus potentially putting them in harms way. It is one of the types of defensive medicine.

https://www.sciencedirect.com/topics/medicine-and-dentistry/defensive-medicine

 

b105196a71c8837933d569fcd46cee5bdc33b6d6.jpg&f=1&nofb=1

Try and see how Yellow Card system responds?

Thank you for the Science Direct link. I never imagined that this existed. Will read it again. Very interesting.

 

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On 11/05/2021 at 09:46, Flopsy said:

Thank you Will for asking. I didn't want to bore anyone with the details

This was the list I wrote to report the first Yellow card (minus a few really embarrassing things)

...

Sorry to read that.  Did you previously post that you had multiple sclerosis?

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2 hours ago, Will! said:

Sorry to read that.  Did you previously post that you had multiple sclerosis?

I'm feeling a little overwhelmed right now so will not say much more. t's been a bad 10 years or so with serious stuff. That is probably why this feels as if it could be more serious than a possible migraine. Then again it could be really simple if I could get someone to look at it. 

Thank you for your kindness and remembering.

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18 hours ago, Flopsy said:

Thank you. A few things are looking like an allergy.  Fortunately for me that part only lasted for the first few weeks (the bad problems swallowing). My throat is back to normal again. My glands are still swollen.  On my second visit to A&E no one touched me again or looked in my throat. 

I've tried to talk to my GP and find out who locally in my area deals with this. No one. I had my phone call with him now and he doesn't think I should have the 2nd before this "all calms down". 

If I want to see an Immunologist or a Neurologist he says that the waiting list will be long.

 

I think if you mention you can pay (if you can afford it) the waiting list may be much shorter (this is what a relative of mine has been told about a NHS consultant for a different matter - can wait months or pay a fee to go straight away via private route to the same person).

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On 4/6/2021 at 9:19 AM, AThirdWay said:

You've had a torrid time of it. Can you think of anything that might have triggered these symptoms, other than the vaccine of course? I've heard, anecdotally, that if you already have antibodies present then side effects are more likely, but not to the extent that you have had.

Both my partner and I have had 2x AZ jabs now, I'm 60 and have an underlying condition, she works closely with GP's across the country, with literally no side effects whatsoever. Discussions my partner has had with practitioners tells a much different story with regards to the side effects, or rather the lack of them, in their patient base. The worst she has heard of was a suspected blood clot (pains across the back of the rib cage and shortness of breath) but the symptoms had basically cleared by the time the patient had a scan at the local hospital.

The worst 'common' side effect appears to be up to 3 days of flu-like symptoms, but again, the incidence rate is pretty low.

Hope you get over this soon.

 

On 5/12/2021 at 10:09 PM, Flopsy said:

I'm feeling a little overwhelmed right now so will not say much more. t's been a bad 10 years or so with serious stuff. That is probably why this feels as if it could be more serious than a possible migraine. Then again it could be really simple if I could get someone to look at it. 

Thank you for your kindness and remembering.

@Flopsy why did you choose to ignore @AThirdWay ?

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Posted (edited)
5 minutes ago, MonsieurCopperCrutch said:

 

@Flopsy why did you choose to ignore @AThirdWay ?

Apologies. I genuinely didn't see it. Sorry @AThirdWay and thank you @MonsieurCopperCrutch

No, I can't see anything else that would trigger it. Wish I could as that would help find a solution. 

From the ZOE app I can see today others with similar symptoms to my own.They added a section I'd not noticed before with questions for the team. People with side effects posting questions there.  In particular these intense new head pains. 

I joined an online migraine group to find others new there with the intense week after week head pains after the vaccine. 

 

Edited by Flopsy
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