Clinically extremely Vulnerable - never assume

[Katmal-UK]

Hi, following on from Lyn1987 post please dont assume you are on the list for the vaccine even if you had a letter to Shield. My GP refused to Shield me so I got my MP involved and a shielding letter from my Onc. After asking my GP 5 times, not getting an answer regarding the vaccine and where I was regarding priority and going to the NHS to get help my GP has confirmed that I am low risk even though I am on a PARP. My MP is again looking into this and my Onc is writing to my GP. When you have a GP like mine who will not acknowledge I am a cancer patient 'oh we can see you have had a malignancy in the past but you are ok now'......

[citrine]

I am classed as extremely vulnerable due to having my spleen removed - metastases from primary OC. However do bear in mind that this won’t put you at the front of the queue for the vaccine. I’ll be getting mine with the over 70s as opposed to the over 65 age group so I’m not expecting it any time soon.

[Katmal-UK in reply to citrine]

My Onc has said I should be getting the vaccine sooner rather than later, my GP says no so go figure.......

[Everhope in reply to Katmal-UK]

My understanding from the priority list is that people on the extremely clinically vulnerable list will be vaccinated with all those over 70 years. I believe some hospitals give it to people when they attend outpatient appointments. I think they are rolling it out as quickly as possible. I am over 70, live alone & on the list but I feel waiting a few more weeks to see my family is doable!

Cx

[Katmal-UK in reply to Everhope]

I agree and im not trying to jump any queues but to be told yr low priority when you know yr not isnt right.

[Laurasdaughter in reply to Katmal-UK]

Hi Katmal - my mother Laura/Lindaura really felt encouraged by your posts. Neither my father or i have cancer, but i have had my spleen removed (like someone above) and so had my mother (an hereditary blood disease, Spherocytosis). i am classed as extremely vulnerable as a result, and my 75-year-old father is also at great risk because he has a pre-existing condition: a respiratory disease, Sarcoidosis. All the same, we're obviously not getting a vaccine any time soon. It's worrying.

[Katmal-UK in reply to Laurasdaughter]

Hi, I imagine its been a difficult year for you and your father since your mums passing , a very brave lady.. I hope you are both doing ok. Its very worrying for so many, lets hope they get on top of the vaccine programme soon x

[Frenchhouse3]

Hi Kathy, my Onc said I’d be lucky to get the vaccine before six months. I’m classed as extremely vulnerable but he said it’ll still likely take months! ( I’m on Olaparib too ) xxxxx

[Katmal-UK in reply to Frenchhouse3]

I agree itll take time but I wont even be given it with others on Olaparib. Im low risk according to my GP who wont budge in her opinion.

[Frenchhouse3 in reply to Katmal-UK]

I was surprised it would take so long for us on Parps and I got the feeling my Onc thought we should be prioritised more. Could your Oncologist email your GP and tell her she is wrong?

It even states on the Govt. website that people on Parps are in the higher risk group.

I really feel for you Kathy, your doctor sounds really arrogant and it must be extremely frustrating for you?

Denise xxx

[Katmal-UK in reply to Frenchhouse3]

My Onc is going to write to her and hopefully she will change her mind. she wouldnt change her mind about me being shielded so I am not holding out much hope. To be honest she wont listen to anyone. Im gonna have to fight to get the oxford rather than the pfiser jab too because I have had a severe anaphylactic shock so cant have the pfiser jab.

[Frenchhouse3 in reply to Katmal-UK]

I’m so glad your Onc will do that. I wouldn’t want the Pfizer jab either if I was in your position. Stick to your guns! Honestly, your doctor should be a lot more understanding and helpful after all you’ve been through!Mind you, I know you will stand up to such incompetence, that’s why we all love you in this site. You have balls! Xxxxx

[Hidden in reply to Katmal-UK]

Disgraceful, have you considered complaining to the ombudsman, I am always reluctant to make formal complaints in case the care I receive diminishes, but in your case I don't think you are being given the care you deserve.

ombudsman.org.uk/sites/defa... Good Luck

[Katmal-UK in reply to Hidden]

I have complained through NHS but intend going a different route, Im not letting this lie and intend to change GP in the future. Im only with this one because mine retired and asked this practice to take over his patients, not through choice.

[delia2 in reply to Katmal-UK]

I was going to say get a new go. This one sounds horrible. You’re on a PARP end of story.

[Lizjj in reply to Katmal-UK]

Hej Kathy..sorry to hear you have to fight to get the vaccine. Awful!!! Kathy regarding the pfiser mod Oxford...why is the Oxford better for you regarding anaphylactic shock? Are you referring to the anaph.shock you had during chemo? Why do you think the Oxford vaccine is more unlikely to give a reaction? NICE hearing from you again. ...

[Katmal-UK in reply to Lizjj]

Hi Liz It's just an item I was watching on TV about the Pfizer vaccine and one of the questions asked was about anaphalatic shock. They question why this was asked and apparently if you had a severe shock like I did then you shouldn't have it. In fact my Onc wants me to contact him when I am offered a vaccine because he wants me to have the one that is safe for me. I'm just assuming at this stage that Oxford will be better as I have not heard about any reference to allergy.

[Lizjj in reply to Katmal-UK]

Thank you Kathy. I will most certainly keep this in mind when I am offered the vaccine. Nice hearing from you again

[Hidden]

Thank you Kathy - I will check with my Doctors tomorrow that I am indeed on their list of clinically vulnerable people. Good luck, you really shouldn't have to battle so hard. x

[Katmal-UK in reply to Hidden]

I do nothing but battle this GP, she doesnt even recognise im a cancer patient.

[WoodyB]

One of the GPs in my wife's GP practice didn't even know what a PARP inhibitor was! She has been on olaparib for over 3 years and the GP practice is sent a clinic letter every 8 weeks! Don't suppose they ever read them.

[Katmal-UK]

Exactly the sort of point Im trying to make. If the GPs dont understand then you wont be on the correct list.

[Newbie_2020]

Where do you collect/source your Olaparib from? if in hospital/trial centre perhaps check with the trial admin and if in luck you'll avoid the GP and associated hassle.

At the very least they'll hopefully know/confirm which of the available vaccines is most suited for cancer patients and mainly those who have had any allergic reactions as a result of chemo or other treatments.

As you have known Pfizer is not an option for you although its revised/new version of Pfizer's now claims that it is not suitable for those who have had a previous allergy to one of its ingredients with no more mention of other allergic reactions as previously stated in its original version.

[Katmal-UK in reply to Newbie_2020]

Ive already spoken to my hospital and any vaccine will be administered by my gp. My understanding is that if you have had anaphalactic shock and Ive had a grade 3 so would not even want to risk it.

[Neona]

This is shocking!

[Wasginger090658]

Rude and arrogant, all cancer patients are and will always be forever vulnerable. I would definitely be changing GP. Unbelievable!!!

[fair-rosamund]

Agree with advice to go to the ombudsman. I'd also contact the Clinical commissioning group for your area and request change of GP. I've also been reluctant to complain as concerned about continuing care - but you could make a formal complaint to the GMC and start a fitness to practice case about your GP.Good luck.

[ellseybellsey]

Kathy,Your gp hasn't got a clue anyone on a parp are classed as extremely clinically vulnerable, carry on fighting Kathy don't drop it.

Hugs Ellsey xx

[Katmal-UK]

Hi Ellsey To be honest I feel like throwing in the towel. Just heard back from the MP who advised that the NHS say it's a matter for the GP so the MP will now take it up with the GP but if she stands firm I don't know what I'll do. Fed up.com! Hugs back at you, hope you are doing OK xx