Hi all… this is my first post. My husband has Parkinson’s and during the first 12 years of his Parkinson’s he has been very independent. Up till recently he has been able to manage and I hadn’t really gotton involved in his medical appointments. However since xmas, he has really deteriorated - probably mainly due to a nasty chest infection and other possible infection. He has a great neurology consultant and Parkinson’s nurse and has also been seen by the elder care assessment team at the hospital. However, his GP practice, which changed leadership a few years ago has gone from bad to worse… just went we need a good GP.
Over xmas, he got a terrible chest infection which really set him back and a leg ulcer. His GP no longer has a wound clinic for dressing wounds and it’s near impossible to get an appointment with the nurse so I learnt how to dress the wound. It’s also incredibly hard to get an appointment with a GP… I’m tech savvy and have managed to use the app however… but you can’t book appointments in advance at all.
We had a letter - which also was sent to the GP - that the consultant in the elder care at the hospital recommended a number of interventions and further tests be done at the practice to address what they suspect is a low grade infection. I followed up and just got a run around. I was told that it wasn’t urgent and that they weren’t prioritizing non-urgent appointments last week. The next day, I approached them again using the app and I asked that they ring my number as my husband now finds it difficult to answer the phone. Of course, they rang my husband! I found out and then rang them straight back and then I was told the GP would ring but they didn’t and then I did find out they closed the case. After work, I went into the surgery to explain and to try to speak to a GP to get things going and the receptionist just stonewalled me and was very patronising.
The next day, I went in at 7:30 and waited and the practice manager said I should go home and use the app. I said that I needed to make an appointment there and then as it was urgent. He then made a request for me to speak to a GP but he was very rude and asked why my husband didn’t answer the phone. I tried to explain but he was so rude.
I finally got to speak to the GP who was very kind and helpful and she immediately instructed the district nurse to come and do some more tests. The district nurse came the next day which was good. She also did speak to the practice manager about why we hadn’t been given an appointment.
I feel somewhat relieved but I’m still stressed - it just feels like in order to get your loved one seen to properly it’s a big ordeal and you have to constantly be checking and looking and making sure that the people who are meant to help will help. I also don’t understand how a GP practice can make it so difficult and impossible to get help!
The other thing I just realised … because I can read all the notes they put on his case via the NHS app is that, while the practice managers have diligantly filed the recent neurology consultant letters and recent elder care consultant, they hadn’t been flagging them to the GPs and hence he hadn.t been offered meeting with the GP which he used to have after these letters. The nice GP pointed that she spoke to the practice manager about this.
Anyway, just wanted to come and have a rant - it really feels like this is a campaign that Parkinsons UK, along with other charities should take up - good primary care is crucial and we all deserve better.