I would like to ask our vulnerable patients how happy they are with their Gp by marking/10?
I think if there is problems they should be discussed openly and constructively
10/10 being highest
Mine is -1/10
My Gps attitude is because Im not receiving immunosuppressent drugs I am no more vulnerable than anyone else, ignoring the fact that I have two ongoing health conditions, got Covid after FIVE jabs and was on the list for jabs 6 & 7. Has anyone else experienced similar problems?
Good advice as how to deal with problems has been given to me by @BloodCancerUK & patients association @Alice_BloodCancerUK@Erica I hope this post gets allowed, if not I understand and have informed you.
Hi Anon.I think this varies with us all, as with our hospital experiences. Some are really positive and some not so.
I’m one of the lucky ones in both respects. I can’t fault my GP or medical team. I’m sorry you haven’t had the same experience but pleased you have received support from BCUK and other agencies.
Hi @anon06 I have to give my GP and hospital both 10/10.
That score is for all my medical issues. not just my blood cancer.
I was also well looked after during the main Covid years by also my local authority and local voluntary services.
In the early Covid times my local authority sent people in Haz Mat suits when they said I had not answered their telephone call, it was really surreal and I don’t know what the neighbors thought.
I have had really positive experience from the outset from the NHS with my lymphoma throughout covid when others were worrying and concerned about delays I was really fortunate to be fully supported. My treatment has and remains second to none , I can contact my team at any point and they are super responsive and I am not in active treatment currently.
My gp is not very involved in my care at all apart from ensuring my regular vaccinations like flu are maintained. They see me for an annual review aside from issuing my medication I thankfully have no cause to see them.
I think I too am lucky and would give my GP 9/10, he’s generally very on the ball and responsive to my queries. The only thing I have to do occasionally for him is join the dots of information across the 3 consultants I have for lymphoma, kidney disease etc (and that is primarily down to NHS poor IT systems not talking to each other).
My GP practice seems to have invested a lot of time and effort into making admin aspects much easier - no fight on the phone at 8am to get an appointment , all done brilliantly through a good online system with appropriate triaging (I realise the process may be less easy for people without access to the internet) and a good use of their broader clinical team such as the clinical pharmacist on medication checks etc, so they seem to be doing well on “doing more with less” as their number of patients per GP has gone up over recent years.
I’d give my hospital consultants 10/10 , all brilliant, caring and very responsive. The only person I wasn’t that impressed with was my CNS during my treatment, but I think she was very overstretched but I also didn’t like her attitude to my concerns about Covid risks. I’d give her 3/10.
I have had a range experiences from outstanding care which I have currently from, GP practice, CNS and consultant to very disappointing care which I experienced when I lived in a different part of the country.
When I originally started experiencing issues with blood counts my GP was quite conscientious and referred me to the local haematology unit. Unfortunately I was made to feel a fraud and that Zi was wasting their time as my counts weren’t low enough for them to be concerned despite the fact I had continuous infections which ended up in my hospitalisation a couple of times.
When I moved to another part of the country (which was actually where I was originally from) the care couldn’t have been more different. The haematologist was very thorough and carried out a comprehensive set of tests including a bone marrow biopsy which resulted in my Myelodysplastic syndrome (MDS) diagnosis. Ironically shortly after this I developed a severe infection which evolved into sepsis and if I hadn’t had the emergency out of hours care that was on offer as a cancer patient, I may not have survived. I am eternally grateful to the team I have looking after me now who are medical professionals at their best.
I’m really sorry to hear about the issues you have been experiencing and can related to your frustrations from my early experience on this journey. It may not be an option but perhaps you could change GP and find one who has a greater understanding of blood cancers.
Also you know we’re all here on the forum to provide support as well.
To confirm I have been in remission from Apml twice. @Dyslexicprof glad things have got better for you since moving
I have 2 ongoing medical conditions plus a lengthy medical history which makes me vulnerable eg 5 jabs & I still got covid after 3 years isolation. Yet my GP is oblivious in here attitude, who has described me as “a drain on medical services” if I got home visits, currently Im waiting on access to an elusive antibody test.
On home visits I wrote to the practice manager, her reply appeased me slightly, but only after I discussed this with patients association.
Currently I am persuing free access to the elusive antibody test that will tell me if have antibodies to fight off the Spike Protein associated with Covid. Various sources have agreed with my opinion including @cev families on Twitter.
Take Care
Thank you so much for sharing. We’re really interested to read people’s different experiences here, and we’re sorry to hear not everyone receives the level of care from their GP that they should. Please do feel free to continue to share your experiences if you feel comfortable to, and please do also remember that our Support Team are here for you - if you have any concerns, or wish to talk things through, we are on 0808 2080 888 or support@bloodcancer.org.uk.
I have learned that the Specialists are a bit more conscientious than maybe the Doctors…because in reality the Doctors can diagnose and investigate but they are not trained in that field of medicine…its important to realise that a Doctor has literally thousands of patients and when we are at our lowest ebb and looking for an arm around the shoulders they cant always do that…they dont always have the answers we want to hear
Even in illness you have to appreciate that in reality we are just another problem to them …support groups and Specialists i feel are more supportive…but after a couple of years of living with blood cancer i know now that in reality we are very lucky in this country with the general help we get.
My best wishes to you…and love to you all on the Forum who read this❤️
@anon06 - I’m sorry that you’ve had this experience. I’ve had a mix of very empathetic and understanding Doctors and then other staff like receptionists who seem to think you are being overdramatic and difficult. I do try and remember that everyone is trying their best but I do think some people are totally in the wrong job and that if they don’t have the right personnel skills then they shouldn’t be in this field!
The thing of concern at the moment is that it is no longer compulsory to wear a mask in clinic despite the fact that it is full of those with weakened immune systems and those who are clinically vulnerable. It seems like such a regressive step and now every time I wear a mask (which I would do regardless as my husband is a carer looking after clinically vulnerable people) I feel like even the staff at the hospital think I’m being paranoid and over the top when I am simply trying to protect myself and others!
Hi Tanya you know who I am thanks for this I will reply properly by email check email foa tanya re message board
To confirm email sent.
Thanks for being there as always.
EDIT MADE 6th June
May I suggest that profile pictures of the @BloodCancerUK support team are posted under the words perfection and dedication in the dictionary after advice & communication today!
I have not long had a concern meeting with head of unit head nurse and Pals regarding masks and that I’m still CEV and still shielding
It’s been confirmed that I can ask anyone in the unit who is close to me to wear a mask including my consultant
I shall be wearing my stand back I’m shielding badge from blood cancer uk
Good contribution thanks. I was visited by podiatrist at my home. He was very arogont about not wearing a mask, and said "you won’t get Covid from me"
Do I have the right to make sure (or demand politely), that any medical visitors wear a mask. Of course I get home visits, who do I report to if I encounter such an attitude again?
6th June I was informed by my Surgery that “my bloods” would eventually be done at home via text I later rang my surgery and they confirmed that antibody test would be done at home.
R E L I E F!
What a weight off my mind!
I found it was best to get as much advice as I can & explore all avenues to help you reach your goal.
Then Just keep on probing
"the problem " until you get what you want
NEVER GIVE UP!
I would suggest when you make your appointments that you tell them you are CEV and shielding and have little contact outside your home and that you would like all visitors to wear a mask which you will provide as you feel safe that way and so far kept you safe as your not general population
Your safe space your rules
Thanks, Ill emphasise it.
They were more than aware of this anyway. Perhaps he was just the "odd one " , that you get sometimes. At the very least he should have one prepared regardless, as he is intelegent enough to realise there isva reason Why he is making a home visit. Well I presume he’s intelligent anyway…