Feeling let down by the GP and scared

Hello everyone…new to the forum, but a long time lurker.

I have cared for my older sister since I was a kid, she’s my only family member and she has a long term degenerative condition which has thankfully been stable for a very long time, but things have been getting a lot worse over the last few years.

She’s recently developed some worrying symptoms that are scaring me, because they are all the hallmarks for cancer. I’ve been running urine samples back and forth our GP for almost a month now, and all they keep doing is plying her with antibiotics and saying they’ll review after the course is finished…They’ve offered no blood tests or anything, despite me listing the various symptoms that are worrying me and causing her pain/concern too.

The symptoms of my sisters condition has also become a lot worse over the last couple of weeks, which again has me extremely worried as I feel like the symptoms of the condition could be impacted by an additional health problem getting worse…

I am tired of being palmed off by the GP. I don’t feel like they care about my sister because she has a long term condition which is degenerative and she’ll obviously never be able to function as a “normal person”. All her health care needs have gone by the wayside with this GP. They haven’t checked her diabetes since she was diagnosed almost two years ago, and they gave up on investigations into an on going wheeze/cough that she has for even longer.

I want to get her checked out with a scan, but the GP won’t order any kind of scan without going through a bunch of pointless urine tests. I can’t afford it, but I’m willing to go into debt to get her a private scan, but even trying to arrange that has been a nightmare. The only clinic I can get her to doesn’t have disabled access and despite the scanning equipment being mobile they won’t make allowances for her to be seen on the ground floor. So I’m really stuck!

I’m terrified there’s something seriously wrong and that time is of the essence, but I’m also terrified that she could contract COVID by going out to a hospital/clinic (we’ve been isolating since Feb because she’s high risk and I had a horrible feeling this pandemic was a foregone conclusion back then) and so even if she doesn’t have anything serious wrong, I could be signing her death warrant by taking her to get checked out.

I’m also told that they don’t allow carers to attend appointments in hospitals/A&E or private clinics now, and that’s a no go because my sister has cognitive issues and needs someone to relay/retain information.

I don’t know what to do for the best, and I am exhausted and afraid. I have my own health issues, which make me high risk too. The GP knows this, and also knows I suffer with severe anxiety and still they don’t seem to care one iota.

I want answers, but I’m scared of what they might be and how to get them. The GP who should be supportive and refer for investigations when red flags appear has done nothing. I was even told when I asked for a blood test that they’re “not doing that at the moment”…So despite all the NHS’s “we’re open, come to us if you need us” talk, they’ve got road blocks everywhere.

I guess I’m just wondering if anyone else feels that their GP is a hurdle they can’t get over or around, and if anyone has any experience with attending hospital appointments during all this mess? Can anyone put my mind at rest about having to venture out in the search for answers…

Thanks for reading. Stay safe all! :slight_smile:

How old is your sister ?
What is her condition?
Have you considered residential care or supported
living for her?
When did you last have a Carers Assessment?
When did your sister last have a Needs Assessment?


How are things now with your sister? How are you? I can completely relate to your story, as I too care for my sister who has many complex health needs as well as managing a supported living service for adults with learning disabilities. I have anxiety, depression and am in therapy. I understand how hard it can be to keep everything together whilst caring for yourself. I have been back and forth to the hospitals with my sister during the pandemic and I have been allowed in to support her as she cannot manage to walk, use the loo etc without me. Perhaps make this clear when entering and stress that your sister needs your support.