Keep in touch with your GP and the NHS

[Kevin53]

Please keep in touch with your GP and your Consultant for help with Lupus.

Also help your self, family and friends with other conditions.

Yesterday a cancer specialist said

“So, so many times we've been unable to help because the cancer wasn't caught early enough.

Unusual lumps

Abdominal pain

Blood in poo/urine

Unexplained weight loss

Any persistent symptoms. Please get checked!”

Best wishes Kevin

[Wendy39]

Well said Kevin. I know of two people diagnosed with cancer during this pandemic, with very different stories re promptness of tests and treatment. It is crucial people get symptoms checked. Cervical smear tests are up and running again. Go to these screening programme appointments. They are so important. Otherwise the issues and repercussions with cancer care etc could be bigger than the death toll for covid itself. Wendy

[KayHimm]

Yes, so important. I have noticed messages on patient portals here in the US that encourage patients to stay in touch with their doctors and announce clinic openings.

Doctors are worried that people are not getting care because of fear of infection.

Thanks for the reminder.

Xk

[happytulip]

You make an extremely important point Kevin and I too know of someone diagnosed with terminal cancer during the pandemic.

However, I have to say that it has taken me ages to get some help from my GP. I started flaring on 1st July and now am in a terrible state. My GP is now being very supportive but has absolutely no guidance from my rheumie team despite both myself and the GP being in contact. The Rheumatologist knows how bad I am but won't change any treatment and my next review is on 1st March 2021 over the phone!! How are they going to assess my joints and SOB over the blower?

I need specialist rheumie care as I am now pretty much bedbound and most certainly housebound.

The GP can't lead my specialty care as it's is beyond their scope and they are in the dark as much as I am. The GP was very apologetic but last week just said to me "I'm so sorry, I just cannot help you."

So I don't think the NHS is as open for business as we are being led to believe.

[Wendy39 in reply to happytulip]

I am so sorry to hear how bad things have got for you. It's appalling and you certainly cannot wait until March 2021!

Do you have a Rheumatology Helpline?

As bad as things get here, we do have that and if you telephone enough, leave enough messages, they will eventually get back to you. You need contact with someone inside the department, to get an urgent appointment. One or two of my group have been called in for face to face appointments when their symptoms warrant it.

Do you have the name of a secretary in that department? That's another way of getting access? Telephone main hospital number and ask to speak to rheumy secretary..

Worth a try?

I can't bare to think of you left like this.

In our area, I am fed up of the "The NHS is open for business as usual". Our area has been exceptionally low covid numbers. Plus in Wales, Rheumatologists have not been pulled into covid care. So what are they doing? Hardly anyone has been seen, very few monitoring appointments. Telephone calls being offered in distant future and no videocalls. It's hard to believe we are in 2020. Telemedicine should be very easy. The BSR have even produced guidelines for their members on it, re covid.

Best wishes

Wendy x