After my mum's diagnosis in hospital back in November she was sent home and given just her usual medication for osteoarthritis etc. However she only has follow up care with our GP, the District Nurse and the swallow nurse (can't remember the name). We were told that they would manage her care going forward. She doesn't have a consultant or any follow up appointments with neurology or any specialist unit.
Can I ask if this is normal? Do people with this condition usually have a consultant or specialist monitoring their condition? Our GP has done his own research to get himself up to speed but it seems a bit odd to me that we have no specialist involved and really we are just being told that the GP will manage the symptoms as things progress and sadly deteriorate.
It would be great to hear if that is similar to everyone else for some reassurance that there isn't more I should be fighting for.
Thanks, Louise
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We did have a consultation with the neurologist about every 6 months. He couldn't offer anything but say we are doing well. The GP was the lynch pin , although Chris was quite healthy apart from PSP
Keep the letter from the neurologist with the diagnosis though
Keeping mobility is crucial. You need the community team's support.
Hi Louise, I am also on here with a mum fighting PSP so I can comment on our care.
It is good to hear that your GP has researched the condition as a lot have no idea about it, however I am a bit surprised that you have not been given a consultant too. Though this may be because it is a new diagnosis, when my mum was first given it as a possible diagnosis, we were given no information until later in the year when we saw her neurologist. At that appointment we were introduced to a representative of PSPA and given a lot of support and information. We do go to see her neurologist about every 9 months now, he has adjusted some of her medications, but mostly it is just about monitoring her deterioration.
When she was first diagnosed she was still trying to live a normal life and we had a lot of hospital runs and broken bones from falls (osteoporosis). She is now in a wheelchair full time so life is boring for her, but a lot less broken bones.
I would ask either the clinic that gave the diagnosis or your GP to see why you have not got a follow up appointment with the neurologist. Though, we are physically quite close to the hospital (30mins) that is looking after mum, so visits are relatively easy, not sure I would be so keen to go if we were further away.
I so identify with your comment about life being boring for Mum but a lot less broken bones, we have had a lot fewer A&E visits over the last year purely because Mum is less mobile and can't get out of bed or her chair, though last night she was having a good try as she got a bee in her bonnet about poaching an egg & wanted to get in the kitchen !!
We could go to a neurologist every six months but why bother as there is nothing they can do but monitor the decline. The GP is who will deal anything like colds or the like. I don’t expect to talk to a neurologist again.
My husband did see a neurologist but not for long. He said there was nothing he could do and as it was an effort to get to the hospital, unless we wanted to continue, he recommended leaving all future care to the many other professionals as and when we needed them. After the diagnosis we didn’t see anyone for 18 months apart from a few trips to A&E after falls. At first he deteriorated gradually and I managed his care as he had no other medical condition at that time. The GP never got involved until he had an upper respiratory tract infection. Penicillin caused other problems and PSP symptoms increased so other folk became involved. When my husband started going to the day centre at the local hospice, I mentioned he rarely sees the GP and was told C may not see him but he & other professionals regularly meet where his condition was discussed and everyone would report back if they had seen my husband. We would then have visits from folk they had suggested, speech therapist, continence nurse, occupational therapist etc.
Colin was the first PSP person they had treated at our surgery and like your mum’s GP, ours found out all about it. As my husband’s symptoms increased I would get advice from this site and then contact the GP requesting things that had helped others here. Many times I said, “Could we have......?” and he always said that it sounded like a good idea and organised it through the occupational therapist or health visitor.
Hopefully as things change with your mum the correct help will be available S and when you need it.
Six years into CBD first port of call is our palliative care nurse. She prescribes medication sometimes in consultation with the hospice. When my wife has been in hospital the neurologist has paid her a visit. As we have daily visits from the District Nurses they also have an input on the progress of the disease. No need to contact the neurologist.
Mum seems to get an appointment to the neurology clinic about every 10 months. I dread them. She gets her hopes up that they will be able to offer help but they can't, so then she gets down. The best they offer are referrals to other disciplines but these could also be done by your GP or Community Matron, so I wouldn't worry about not having a Neurologist, it is far more important to have a good local support team.
Once the neurologist has diagnosed some type of PSP and since, at the moment, there is no specific treatment for PSP, the care of the patient is derived to the GP to treat the symptoms that appear. Every 6-9 months we have a consultation with the neurologist who simply verifies the evolution of the disease. In our case, GP is the basis of follow-up and palliative treatments.
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
By private mail I send you our particular experiences on PSP-RS that we hope you can find useful.
We stopped going to neurologist as every time he said( you know there is nothing I can do for you), we got mum under the care of the local hospice, Gp, and district nurses., they all did very well for mum.
Dad benefits from seeing a neurologist, initially one with a special interest in Parkinson's then one with a special interest in PSP. I think it is essential as even if they 'can do nothing' the insight they provide in related issues if very important.
For example Dad had a UTI and it was pretty unclear to me whether he was declining fast because of that, PSP, or a new medication. The neurologist provided insight into that which the GP also assisted with but having both was more helpful than one. Also, he was first to refer dad to palliative care, and then the GP suggested a more local palliative care team - so although the GP could have done that, it happened that the process moved along because of the neurologist and then the GP tailored it to be less difficult to access. Also, the neurologist ordered on the spot blood and urine tests for Dad when we were at hospital which sped up his treatment for a bladder infection.
All these things are interrelated and each care professional can and should work with each other and not fob anyone ff with 'there's nothing more I can do'. I think the speech therapist referral (for swallowing) also came through the neurologist.
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