Do you feel your GP fully understands PSP - PSP Association
Do you feel your GP fully understands PSP
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It was thanks to my GP I got my diagnosis and he been so supportive through this journey
Not only does our GP have any clue what CBD or PSP is (and other neurological disorders), she also has no interest in knowing. She never calls my wife up for a talk, she has no interest in her patients. As far as she is concerned, there is nothing that can be done about it. A very easy opt out. There are many things that can be done to alleviate a dreadful situation. And one would expect some help and advice, but none has ever been coming forward. Thank God there is a charity like the PSPA, without their outstanding help and support we would not have known what to do. We have now an excellent support team around us, but not thanks to our GP. I would also like to mention here the outstanding support and help we are receiving from Dr James Rowe at Addenbrooke's Neuroscience Department in Cambridge and who have also been instrumental in getting the support team organised. They work hand in glove with the PSPA.
So far we have had excellent support from our GP and Neurologist.
Not only did my mothers doctors surgery not know much about PSP, they seemed to care not a jot. In the years I cared for her they never phoned or visited and when I had to take her in for "patient reviews" they would rarely even notice her. Concentrating only on ticking boxes on the computer. It was never possible to hurry with mum, and prior to leaving the home for an appointment, we could find ourselves in the bathroom for a considerable time. Several times we were late for appointments and were put to the back of the queue. Their neglect of her was disgusting. If I had POA I would have found her a doctor that was interested. She of course didn't want to make a fuss. Neither can you trust a hospice. They have little or no experience of PSP and through their ignorance can cause serious harm.
My husband's GP was interested enough to try to find out more for himself - if we had to call him out he arrived asap and was very sympathetic. The Community Nursing team and Tapping House hospice-at-home team also were excellent. We only saw Dr James Rowe twice at Addenbrooke's and he was kindness itself, even waiting until our transport arrived. The Neuro clinic at the QEH King's Lynn, we felt could have informed us better as to their PSP diagnosis but the SALT and OT there were supportive. Also, can't fault the Iceni Care Home at Swaffham.
My dad sadly passed away due to PSP recently. His GP was amazing. Once dad had being diagnosed he took it upon himself to find out as much as possible. When it became too difficult to get dad to the surgery he pencilled in monthly home visits regardless. These then progressed to fortnightly then weekly; very often on his day off. We were truly blessed as it's unheard of for most family GPs to do this now. Sadly he's retiring soon and actually said that dad's illness and death, along with other factors, had made him and wife take stock and take early retirement with the hope they are around to enjoy it!
My GP does not know everything about PSP. When my husband was diagnosed in 2010 he pulled in the community matron and her team, together they have made it their priority to find out as much as they can, and between them have been a tremendous support to us. We are all still learning as we go along and this site keeps our spirits up as we all ride the waves together every minute of every day, but here in the south west of england there is not a lot of knowledge re PSP, maybe in the near future we will get through to our health and social services that is a complex and really heartbreaking condition and we should be having the same support as people with other neurological conditions.
Very Keen GP - She had not heard of PSP on first visit. She was delighted to be given the PSP Assoc. Care Pathway Doc. - Very understanding and attentive to care issues and she made all of the necesary referrals to day hospice, OT, Physio etc. without prompting. A+++
My mom's GP's mother-in-law had PSP. He was actually more informative and sympathetic than the neuro. (That sounds bad cause her neuro was wonderful as well. He just didn't like staging or warning us about what could be next. His standard line was, "Everybody's different.")
I had to call my GP recently because I was so worried about my husband. My husband has a Advance Directive in force and my GP's response when I asked him to come out and see my husband was "if he won't go into hospital what do you expect me to do?". I insisted on a home visit and when the GP arrived he was kindness itself but he just said deterioration was part of the condition and he could go into hospital and be assessed for a care home. He will never be in a care home while I have breath in my body but this is all the GP could think to say. He would have given antibiotics but there was no sign of infection. The local district nurses are a different kettle of fish. They arranged for a hospital bed as an urgent referral when I approached them direct because my husband was falling out of bed and I couldn't lift him. The GP said he would refer us to the district nursing team but it could be three months!
Sadly my partner has had parkinson/psp for 14 years now and I would say the GP has no interest in finding out more. On one occasion the neurologist suggested he would benefit from more physio the GP's response to me was "he has tried that already and it didn't work"! Oh dear!
